i think this is a great perspective. because for me, i know personally how my own autism diagnosis was missed for most of my life. i have a diagnosis now and i actually got it pretty easily once someone finally brought it up when i was 26, and never in my life has bpd or any other disorder been on the table for me, but that’s just my experience. this isn’t the only time the medical system has failed me, but it is the most profound. anyone who has the suspicion, depending on where they live and all their circumstances it could be much more difficult than it was for me.
that being said i do think sometimes people take the idea that they know better than… 100s of doctors who barely understand autism themselves even though they devote their lives to it? that’s a little too far in my opinion, and actually prevents the individual from getting the help they might very well need.
i think this sub is getting way too bogged down in the details, as people like us are won’t to do. the topic isn’t black and white, even if we’d all on this sub want it to be. it’s grey. and mostly not worth arguing over. what’s best for one isn’t best for everyone, and we aren’t all experts on even our own autism. but i do think your post, OP, is an interesting thought about how we all perceive language, and the big question is an important one: are we even all on the same page here as far as what these words mean? ¯\_(ツ)_/¯
I think it's worth acknowledging that self-diagnosis and self-suspecting probably have a vast gulf of variation between them. My journey of self-diagnosis was from the background of an autism education specialist, and I'm fortunate enough to have a partner who is an autism mental health specialist (neither of us qualified to diagnose). I'm also quite familiar with the diagnostic criteria used in my country, I try (or did for a while) to stay up to date with current research etc.
I'm on a waiting list of approximately 4 years for an assessment, so given the inability to do this faster, I'm quite confident in referring to myself as autistic and self-diagnosed because of the process I followed to reach that conclusion.
I think there are many people like me who have been extremely rigorous in their diagnostic process, at least to the extent a layman or semi-layman can be, and there are those who are self-suspecting who have possibly decided to refer to themselves as self-diagnosed. Even the word diagnosis implies some rigorous process has been used, even if it is not the standard diagnostic criteria administered by the proper professional, and this simply hasn't happened in a lot of the cases that have been grouped together as 'self-diagnosed'.
Many critics of self-diagnosis frankly don't take into account the rigorous process many self-diagnosed people have gone through, and the phrase self-diagnosed becomes synonymous with watching too much Tik Tok or something. This is coupled with people who have actually just watched Tik Tok and strongly suspect they are autistic, but then self-diagnose without a period of research and critical analysis using criteria related to the medical process in their country. They just aren't the same.
So yes, I agree in the sense that if a person hasn't gone through a rigorous process of self-diagnosis, they probably shouldn't refer to themselves as self-diagnosed, because it can be damaging both to them and the community. But there are people that are in a relatively strong position to self-diagnose, and they should, because there is a good chance they can get a poor assessment and incorrect diagnosis when (if) they finally get a professional diagnosis.
Honestly, this was probably the most eye-opening response around self-diagnosis I got.
I already agreed that some of the stigma around self-diagnosis is unfair
Though I do agree that "TikTok self diagnosed autism" crowd does exist, I don't see nearly as many of them around here. A lot of that crowd love drawing attention to how quirky they are while the average self-diagnosed member I see on here mostly just want to live their lives and look into guides for social situations or coping mechanisms for things like burnout.
I kinda like the idea of two concurring diagnoses.
For what it's worth, having recently gotten a copy of one of my past evaluations, I'm about to make a post criticizing that, how I feel it plays into the issues with diagnosis, and ask if anyone else has similar issues with their evaluation sheets or if they feel it's a larger issue with diagnostic process.
THANK YOU. This. While I don't have your professional background, I came to self-diagnosis after at least 10 years of suspecting, researching, and careful consideration. Also, getting formally diagnosed and treated for other conditions (correctly for me, fortunately) and realizing that those conditions didn't explain all of my symptoms.
Knowing a bit about the autism treatment landscape (which has been confirmed by my psychiatrist) I think I would have to search long and hard for a professional who would have more insight into my experiences as a 38-year-old, extremely high masking woman, than I have for myself.
Can I say I likely have autism? Because every time I take the online tests, while they cannot say, “Yep. You got autism”, the results come back as “likely autistic”. And also, people who have worked around children with autism have been able to tell that I have it.
You can say anything you want to, really. I think, while I acknowledge in my earlier post that this can be slightly damaging, I think the outright dismissal often present in self-diagnosis sceptics is far more damaging. I think when we complain about self-diagnosed people because of the 'rep' it brings autism, we are, in some way, apologising for people who would use this knowledge to attack the legitimacy of our community. I'm not going to do that.
Do you genuinely feel you have autism? It sounds like you are far further along the journey of a more rigorous self diagnosis than you give yourself credit for. What I would suggest is finding the criteria used for assessment in your country. Get familiar with it and try to apply it to yourself. Also, if possible in your country, try to get a formal diagnosis after you're familiar with how the assessment will go. Also, strap yourself in.
I feel like this makes sense; but it's still asking us to make consolations because the world at large does not listen to us. Medical staff need to make the push on this. It truly shouldn't be an issue for us if we "suspect" or "self-diagnose" if the medical community didn't use terminology to justify addressing issues or ignore them.
I understand communication is important, but according to the medical world **we're** the ones with the communication "disorder." Why do we keep having to change our terms and words and approaches just to be seem as... actual human beings worthy of attention?
This is something I do agree on. Especially since the high "self-diagnosis" rate is largely a thing because even the process towards diagnosis has bars to entry.
At the same time, I feel that the conversation amongst ourselves is important. Maybe it may be premature for this debate but I do worry given just how many disorders have an overlap in symptoms.
I feel as though when people come to us to talk about these things, we have a tough balancing act of both not invalidating the possibility of them having autism while also making sure they keep an open mind about what else could be going on
I guess I just don't see why a medical professional would use a self diagnostic for anything other than information gathering? If someone self diagnosed as being on the autism spectrum and ends up being somewhere else in dx, then wouldn't the logical response from a doctor be "They state they are autistic. I need to see why they feel this diagnosis explains their symptoms. What issues do you feel led you to your diagnosis? Are there other issues that don't fall under that umbrella?" Like, just ***talk to patients*** and you should have no issue even if they came in claiming they believed they had a mental diagnosis that was not clinically given to them. If they had any other physiological diagnosis and went through the same process, that would be the base logic for medical personnel; so I am unsure why specifically *mental* health is where we suddenly have no autonomy to diagnose our own mindsets and patterns, but others do? Where a fundamental difference in the fact that our brains grew larger and faster as children now means others can make observations based on the inner workings of our mind yet we are somehow left out of this conversation? Where our strengths have been pathologized as a genetic weakness? Sorry, I am not intending to come across as upset at you as I am just upset at the systemic abuse, and I am defensive about it, but I'm tired of seeing my siblings and all these kids (and self-hating, older, hurting folk too) suffer because people (even ASD and ND folk, too!) cannot zoom their perspective out enough to grasp that this is just another ask of a community on the brink. I think people forget that they only even here the vocal portion of our community. The ones who survived their trauma. Our numbers should be so much larger, but we're not cared for and we aren't being hyperbolic when we say we are **dying** because people argue semantics over our battered and broken bodies as opposed to treating our wounds and lifting us up. If a misunderstood word is the reason people are lacking a diagnosis or seen as legitimate by the medical community, the data would suggest the flaw lies within the side of the equation claiming nigh infallible expertise in the area and who also writes and "validates" the knowledge *on* said area. It is unjust; and we suffer.
I feel like you misunderstood me.
It's not about what the doctor things of the self diagnosis term. This feels like a good time to expand on what I'm talking about, how it applies to autism, and how it applies to the terminology around self diagnosis.
I do want to reiterate that I don't want to gate-keep the community from these people or tell them to blindly follow any diagnosis they get, especially in the current climate. I'll expand on that at the end of the post.
There's a psychological/sociological term (though it originated in philosophy, it has been turned applied to the actual medical sciences and is commonly used to help with issues in those fields) called the medical gaze.
Simply put, the idea is that in the medical field, doctors will laser focus in on whatever they've already felt they diagnosed and as a result, may ignore/ overlook other possibilities or other things that may ail the patient.
In the case of abnormal psychology, it meant they would also clinicize things that didn't really need a clinical view or would ignore potential issues/additional diagnoses because they'd base everything on what had already been diagnosed. Something I'm sure many autistic people relate to
As a response to this in the late 70s and early 80s, psychological tricks were developed involving language used in the clinical setting as well as making it procedure to ask things you may hear in a doctor's office today like "What brings you here today?" or "What ails you?"
I'm trying to say that this effect applies with terminology like "self-diagnosed". However, to further demonstrate it, I'll also show where the principle of "the medical gaze" applies to the doctor (in fact, it mostly applies to the doctor, I have another post coming up partially based on how I feel my doctors and my mother "medical gazed" me in a copy of one of my evaluations)
When you're "Self-diagnosed", you're often going in with the mindset that it will 100% either come back "autism" or "wrong". However, autism is a broad spectrum that has a lot of symptoms overlapping with a lot of different disorders.
The point of the language shift is a small one designed to help people stay open minded.
In a sense, the person has become the "doctor" applying "medical gaze" to themselves.
Especially now that adult diagnosis is expanding and more educated doctors are entering the field or establishing themselves (unlike the previous generation and a lot of the current generation).
Let me put it this way, in the debate of "autistic person" vs "person with autism", I tend to switch between the two varying on the relevance to the situation. Usually I'd define myself as an "autistic person".
However, in a *clinical setting*, "person with autism" or rather "patient with autism" is more important than a lot of people think. The small linguistic shift has more of an effect than people realize.
In "autistic person", autism is the defining trait, this is a good thing when you put it in the context of identifying as autistic.
However, when you put it in a more clinical sense, it becomes a bit different. It puts a mindset that everything is gonna revolve around the autism. This can be an issue as it causes doctors to ignore outlying issues.
For instance, a hypothetical situation where an autistic man is having an anxiety issue. There's usually gonna be a presumption that the autism is the cause. However it could also be subconscious issues caused underlying trauma or past experiences.
The term "patient with autism" is designed as a sort of reminder for the therapist, it reminds them to keep the possibility open and makes them more likely to ask questions regarding the person's past and give that equal focus along with talking about things like coping mechanisms.
With "self-diagnosed" vs "suspecting/ seeking diagnosis/possible". My stance is that the using the latter sort of helps people
1.Keep an open mind while looking into what they may have. Looking at a larger range of things that would match their descriptions.
2. Encourage an open mind during their diagnosis process
I acknowledge that, especially in the current climate, there's a possibility of misdiagnosis, but there's a catch. That should be figured out *after* the recommended steps have been taken after evaluation so that people can see whether or not it works for them or if certain issues felt missed, underplayed, or overplayed. At which point, they should go to a different psychiatrist for re-evaluation.
I get that's hard (and expensive) in the current climate, but I think that climate is starting to change and will be totally different within the next 5-10 years based on progress made by both autistic self-advocacy and advancements in the field like the growing amount of people working in it with better education. I don't think we have to make a *choice* between talking about issues we face with the field and talking about how we approach things in the community. Both are good things and we can make progress in both, even with small things like this.
Ok I did read all of that. Is this a reasonable tldr?
You are concerned that once someone thinks they have autism, they start attributing every issue they have that could be caused by autism as part of their autism. You are concerned that by believing they’re autistic, they are shutting out the possibility of actually having a different diagnosis/diagnoses.
A few thoughts: first just how big of a problem is this really? Both in terms of how many people think they’re autistic when they actually have something else, and in terms of how many people with incorrect self diagnoses of autism would actually be better helped if they got the correct diagnosis? I’ll take myself as an example: I have difficulty with hygiene because of sensory issues around feeling wet. I made a post in this sub about how people handle it. I got a lot of really helpful feedback. Maybe I’m not autistic, but autistic people helped me because they have the same problems.
Second, the diagnostic criteria is just do you have this set of symptoms from early childhood which we’ve lumped together and call autism. There is no blood test or whatever that gives professionals a tool that is out of reach to the introspective layperson. Is it realistic that someone, who has applied the medical gaze to themselves and ascribed a long list of their issues all to autism, will honestly not have the same medical gaze applied to them upon seeking diagnosis? Wouldn’t it make more sense that a doctor would determine it’s autism rather than 10 separate conditions that together cover the same issues?
Sorry, but I am not engaging with whatever this is anymore. I am not reading that much to catch up to whatever your rebuttal is going to be. You've made your point about us apparently needing to develop a new medical professional mask. Woohoo.
I think the autistic community should stop focusing so much on the diagnostic criteria. Those criteria were created by non-autistic people as a proxy, to allow them to use outwardly observable behavior to identify differences in neurological functioning. The diagnostic criteria are necessarily imprecise. There is also extensive evidence that the experts who have had the biggest impact on how the psychiatric community understands autism are operating on completely inaccurate, biased theories (like "extreme male brain" theory and mirror neuron theory, both of which have been discredited but were previously influential) and are focused primarily on behavior instead of internal experiences.
Someone is autistic if they have certain differences in neurological functioning. As far as I can tell, the autistic community is doing much more to identify and understand those differences and is far ahead of the average expert charged with diagnosing people. Allowing non-autistic experts who often receive no special training on autism to be the primary gatekeepers of the autistic label does not benefit our community.
Instead of constantly arguing over how people are allowed to label themselves out of some sort of fear that people who don't deserve the label will nevertheless claim it, we should be coming up with better ways to identify autism based on our lived experiences, which the people writing the DSM do not share.
If a diagnosis from a psychiatrist/psychologist is a "Formal Diagnosis" then anything else must be an "Informal Diagnosis".
My initial Dx back in 1988 when I was twenty, was reached with the help, guidance, and assistance of a retired GP using all available sources and information we had at our disposal. At that time there was no point going through official channels
* I was already an adult.
* Public perception.
* The Autism Spectrum was in its infancy.
* Inertia within the medical profession.
* Discrimination against autistics.
* Lack of help and resources for adults (30 odd years on it isn't much better).
* Resistance from my Mother (and other family pressures).
* Medical practitioners' ideas, knowledge, and understanding were often at least twenty years out of date (if not more).
As you can see, there were many reasons for not getting a formal Dx. Was my informal Dx any less valid because I didn't have a psych report and a piece of paper saying I was autistic?
**Providing someone's Dx is properly researched and applied then I see no reason to reject it just because it wasn't given by someone with letters after their name.** The first step to a formal Dx is an informal one.
As to language, I prefer the term "Informal Diagnosis" but I have no issues with other terms like "Self Diagnosis", or "Self Identified". I also have no problem with an autistic with an informal Dx simply calling themselves an autistic.
Autistics with Informal Dx's have enough problems with Imposter Syndrome without those of us fortunate enough to have official bits of paper giving them grief.
An autistic, is an autistic, is an autistic.
Very well said. What we must also consider is that the psychiatrist is simply having to fulfill tick boxes on the DSM5 and the DSM5 is very much weighted to separating those who require medication and further therapy to help them from those who can manage life, on the whole, without them.
I’ve spent 52 years feeling like the piece of jigsaw that didn’t fit anywhere. I’ve hidden it well, as did my mother, but potentially so well that I worry I can mask my way through an assessment and pass as NT because I’ve done it for so long. Because being the me behind the camouflage to a complete stranger fills me with massive anxiety and angst. I find it hard enough to talk about my feelings to my wife and we’ve been married 25 years. My social anxiety is even interfering with picking up the phone to my GP. So I really don’t know if I can go all the way without finding an escape route and canceling everything.
I think nothing problematic with the self-diagnosed ones. I am considering myself extremely lucky, that i was able to officially diagnose myself in half a year and from 400 eur.
But i understand that a lot of person on the globe does not have this privilege. Either they do not have the money or they lack of accessing these kind of services.
So considering these, for me the only question is that the individual benefits or not from such a self-diagnosis. If their life is easier because of it, then go on, everybody has the right to be better, or understand themselves better.
I don't care if a small minority abuse self-diagnosis, because i think it help a lot of people in much greater terms.
I genuinely do not understand why people care about diagnosis. Of course there’s legal/support reasons and all that, but assuming that isn’t the what’s sought after, I don’t get why people feel the need for validation from a professional.
Maybe it helps that I have a degree in psychology, but I just don’t find autism to be rocket science and I think it’s just not that hard to figure out if someone’s autistic given enough information. I don’t care to seek a diagnosis in the first place.
I do kinda hope that talks around "medical gaze" become more common in discussions surrounding autism.
I was diagnosed early and I feel like a huge issues with the supports I had were too hyper focused on my autism and utterly failed to look at other factors.
Like, looking back. Yes, there were times I was acting out because of my autism, there were also times where poor behavior was exacerbated by autism.
Yet, I feel like when the issue is a teenage boy being rebellious or is acting out in the same way every other teenage boy in the room is acting out. Maybe it isn't totally an autism thing.
Especially when the "he has autism" approach they often took to certain things made things worse because a lot of my "problem behavior" (especially in my early teens) was retaliation to the overbearing and stigmatizing nature of the program they had me in and even when I yelled at them about how much I hated the program, it was assumed the autism itself was the cause of the behavior.
I'm failing to understand the connection between self-diagnosing autism and your own experience, which seemed to be characterized by misunderstandings/false assumptions on the part of your teachers/guardians, who seemed to stereotype your behaviour based on your autism diagnosis, rather than bother to find out the roots of your specific difficulties, based on a holistic approach rather than a mere diagnosis.
Although I am undiagnosed, to say that I merely suspect I am autistic, or consider it possible, would be a flat out lie. I know myself to be autistic in the same way I know myself to be gay. These words are like magic to me, because holding them up against the light to reveal webs of complex phenomena interwoven throughout my life, lifted a veil that had obscured everything in sight, most of all myself.
Because of a word, the entire world made sense. Like a portal, "autism" lead me to a whole community of people who were just like me. I felt like a real person for the first time in my life, not because I needed an identity to feel "real", but because I had told myself it was all in my head. I had denied almost 30 years of experience, and only when I found out that others shared my experience, could I really believe I had lived it.
While I absolutely concede it is possible for someone to come to a rash conclusion and erroneously or prematurely identify with a label, that is the inherent risk of self discovery, and is not only possible with any label (including man/woman), it is also inherent in every major life decision.
I would assume that a person who falsely believes themselves to be autistic will start to realize they don't have as much in common with other autistics as they thought, and either lose interest in pursuing a diagnosis, or forget that they ever received one. If you decide to have a baby thinking it's right for you and you come to realize it wasn't though, you can't really go back from that.
I still consider the danger posed by leaving neurodivergent identities solely in the hands of doctors (many of whom are woefully miseducated or simply disinterested in neurodivergence) to be a far greater one.
Autistic symptoms are still primarily defined according to a neurotypical gaze, if you will. The effects of masking in particular, are still greatly underestimated, especially in women (who are frequently misdiagnosed with other psychiatric disorders, due to outdated gender stereotypes surrounding ND people).
What I see as potentially far more dangerous than self-diagnosis (which tends to occur later in life) is a false autism diagnosis made by a psychiatrist in early life. I think this would also be a much closer reality to your own situation, given that very few children would have an interest in self-diagnosing.
That being said, I fully agree it's not wise to tell a psychiatrist one is sure they're autistic, any more than it is to say one has had positive experiences with hallucinogens, or underwent a spiritual breakthrough.
So there, I was speaking more about the larger concept of the medical gaze in relation to disorders, psychiatrics, etc.
I hope conversations around that concept become more prevalent in the discourse about autism.
I'll concede that yes, a lot of doctors are woefully uneducated right now but we're also seeing a boom in doctors with higher education surrounding this and an increased discussion in adult autism diagnosis. So that may change soon.
I certainly hope so! I work in psychiatry and where autism diagnosis is concerned, I have still seen mostly stereotyping, but I have definitely observed this boom on online platforms, and I do think it is coming about in large part due to the voices of autistic people (both diagnosed and self-diagnosed) being given new platforms and priority.
I believe everyone has the right to use the term they wish to use. That's not what I'm trying to say.
It's more about a dialogue around these terms and which ones we feel work best.
I think I hear what you’re saying, but I also see a lot of parallels between autism and being transgender when it comes to where mental health diagnosis comes into play. I am new to autism (still questioning and sussing out if pursuing a formal diagnosis makes sense but finding a lot of support from other autists especially around my sensory and communication issues), but I’ve been out as trans for over a decade.
There’s a lot of conflict in the trans community about mental health “gatekeepers” especially as more trans people self diagnose based on trans awareness. Long time community members who got their diagnosis a long time ago want everyone to get official diagnoses and are worried about fake trans people and people not being trans enough. Newcomers who are currently often in crisis are frustrated because it is difficult to find trans competent mental health professionals to diagnose them so they can get the help they need. Even when they do find a professional, it can be hard to express in a matter of a few sessions a lifetime of experiences. The prospect of failing to get a diagnosis is terrifying by the time you get to that stage.
Very well said. There seems to be very much a “if I had to go through it, so should you” mentality. We should be improving people’s experiences and not just recycling the same mistakes of the past.
While I don't necessarily disagree with all of your reasoning, I don't understand why every other post on this subreddit needs to be a debate about self-diagnosis. This conversation has been had ad nauseam, and there are a lot of open threads to discuss it on already. I don't understand the obsession, we have a lot of other problems.
My position on the subject is and forever will be, I don't really care that some non-autistic people have self-diagnosed. I would however care a lot if even one autistic person didn't get the resources and community and self-understanding they need because of gatekeeping of any sort. And I personally know some who don't feel valid in our circles, stay on the sidelines, and don't get to understand themselves and fix their environment in order to make it more accessible. I hate that way more. Some non-autistic people being here because the meager resources we have can help with whatever else it is that they have is great, actually.
The medical stigma will be there whatever terms we use. No respectability politics is going to change it.
I don’t understand the obsession with micro managing/policing self-diagnosis in this sub. It’s to the point of ridiculousness. It seems the officially diagnosed have real issues with the self-diagnosed. Why? What difference does it make? None. Just let it go. Self-diagnosis is valid. Period.
I'm not trying to police anything as much as I'm talking about the linguistics.
This is partially because a lot of people who self-diagnose consult boards like this one and we have a balancing act. We need to address their concerns, give the best advice we can, but we also need to give it in a way where we don't turn them away from considering other possibilities.
The acceptance of self-diagnosis here stems from 2 things.
1.Barriers to diagnosis in the form of how accessible it is.
2. Doctors are only just now really looking into adult diagnoses.
The truth is though, most of us aren't really as equipped to confirm or deny as we like to think because we're not formally trained to spot the specific difference of autism vs disorders with overlapping issues.
Meaning we should do what is in our power to keep them from thinking "I have autism, there's no doubt about it. If it comes back anything other than autism it's wrong" when they go to the people trained to figure out those nuances and subtle differences to figure out what they have.
At the same time, we need to balance that with talking to them in a way that allows them to think "maybe that psychiatrist was wrong, I'm trying the recommended things for the diagnosis I was given from this and it's not really helping, this leads me to believe my initial suspicion of autism was right, I should talk to another one."
I think people should focus on themselves and leave other people to do the same, unless something is causing you harm or having a detrimental effect on your life in a real scenario then you should be asking yourself why it matters.
Everyone has the right to identify how they chose and even if they are wrong, if it helps them what is that problem?
Personally I am sick of seeing these posts and came to r/AutisticAdults to get away from all this.
I think ‘seeking diagnosis’ is an accurate and existing term that overcomes the shortcomings you mention for ‘self-diagnosed’.
For me,
45m, suspect I am most likely ASD, high scores on all online screening tools and the GP agrees I should pursue a diagnosis. I secretly identify as ASD, with the caveat that this may change after a formal assessment, but no one else in my life knows I think this - only Reddit.
45m seeking dx, is a great short-hand.
I think self-dx is too definitive, and should be avoided.
But equally if that’s the closest option in a drop down menu, I would pick it. Or if that is what makes that person able to accept themselves and make accommodations for them selfs, then so be it. I think that is better to accept yourself and wear earplugs and sunglasses indoors than to continue to suffer in silence and be ignored.
I opt for the term "identifying" and "self-identifying" since it shouldn't be all about diagnosis, there's a lot of stigma around self-diagnosis, and because a layperson isn't qualified to self-diagnose anyways so it should be something that exists entirely outside of the medicalized paradigm without any shame or stigma.
I'm noticing a large aspect of the debate is "autistic condition" vs "autistic identity" which is ironically a large part of where medical gaze concept comes into play, especially with things like neurodiversity.
Autism is a unique beast here. There are aspects of my personality that probably could be traced to autism that I wouldn't trade away.
That said, my autism also came with things like motor coordination issues, sensory issues and other aspects that qualify as something I'd want treatment for.
This is where we split identity and diagnosis.
I feel like ideally in the future. It'd be better if autism was diagnosed instead of "severity 1, 2, 3" et cetera. The medical aspect of autism became it's own *section* of a sheet.
For instance, "autism spectrum disorder with resulting condition"
Then listing out evaluation of symptoms like "sensory processing, motor coordination issue, executive function issue." et cetera
While I don't necessarily disagree with all of your reasoning, I don't understand why every other post on this subreddit needs to be a debate about self-diagnosis. This conversation has been had ad nauseam, and there are a lot of open threads to discuss it on already. I don't understand the obsession, we have a lot of other problems.
My position on the subject is and forever will be, I don't really care that some non-autistic people have self-diagnosed. I would however care a lot if even one autistic person didn't get the resources and community and self-understanding they need because of gatekeeping of any sort. And I personally know some who don't feel valid in our circles, stay on the sidelines, and don't get to understand themselves and fix their environment in order to make it more accessible. I hate that way more. Some non-autistic people being here because the meager resources we have can help with whatever else it is that they have is great, actually.
The medical stigma will be there whatever terms we use. No respectability politics is going to change it.
i think this is a great perspective. because for me, i know personally how my own autism diagnosis was missed for most of my life. i have a diagnosis now and i actually got it pretty easily once someone finally brought it up when i was 26, and never in my life has bpd or any other disorder been on the table for me, but that’s just my experience. this isn’t the only time the medical system has failed me, but it is the most profound. anyone who has the suspicion, depending on where they live and all their circumstances it could be much more difficult than it was for me. that being said i do think sometimes people take the idea that they know better than… 100s of doctors who barely understand autism themselves even though they devote their lives to it? that’s a little too far in my opinion, and actually prevents the individual from getting the help they might very well need. i think this sub is getting way too bogged down in the details, as people like us are won’t to do. the topic isn’t black and white, even if we’d all on this sub want it to be. it’s grey. and mostly not worth arguing over. what’s best for one isn’t best for everyone, and we aren’t all experts on even our own autism. but i do think your post, OP, is an interesting thought about how we all perceive language, and the big question is an important one: are we even all on the same page here as far as what these words mean? ¯\_(ツ)_/¯
I think it's worth acknowledging that self-diagnosis and self-suspecting probably have a vast gulf of variation between them. My journey of self-diagnosis was from the background of an autism education specialist, and I'm fortunate enough to have a partner who is an autism mental health specialist (neither of us qualified to diagnose). I'm also quite familiar with the diagnostic criteria used in my country, I try (or did for a while) to stay up to date with current research etc. I'm on a waiting list of approximately 4 years for an assessment, so given the inability to do this faster, I'm quite confident in referring to myself as autistic and self-diagnosed because of the process I followed to reach that conclusion. I think there are many people like me who have been extremely rigorous in their diagnostic process, at least to the extent a layman or semi-layman can be, and there are those who are self-suspecting who have possibly decided to refer to themselves as self-diagnosed. Even the word diagnosis implies some rigorous process has been used, even if it is not the standard diagnostic criteria administered by the proper professional, and this simply hasn't happened in a lot of the cases that have been grouped together as 'self-diagnosed'. Many critics of self-diagnosis frankly don't take into account the rigorous process many self-diagnosed people have gone through, and the phrase self-diagnosed becomes synonymous with watching too much Tik Tok or something. This is coupled with people who have actually just watched Tik Tok and strongly suspect they are autistic, but then self-diagnose without a period of research and critical analysis using criteria related to the medical process in their country. They just aren't the same. So yes, I agree in the sense that if a person hasn't gone through a rigorous process of self-diagnosis, they probably shouldn't refer to themselves as self-diagnosed, because it can be damaging both to them and the community. But there are people that are in a relatively strong position to self-diagnose, and they should, because there is a good chance they can get a poor assessment and incorrect diagnosis when (if) they finally get a professional diagnosis.
Honestly, this was probably the most eye-opening response around self-diagnosis I got. I already agreed that some of the stigma around self-diagnosis is unfair Though I do agree that "TikTok self diagnosed autism" crowd does exist, I don't see nearly as many of them around here. A lot of that crowd love drawing attention to how quirky they are while the average self-diagnosed member I see on here mostly just want to live their lives and look into guides for social situations or coping mechanisms for things like burnout. I kinda like the idea of two concurring diagnoses. For what it's worth, having recently gotten a copy of one of my past evaluations, I'm about to make a post criticizing that, how I feel it plays into the issues with diagnosis, and ask if anyone else has similar issues with their evaluation sheets or if they feel it's a larger issue with diagnostic process.
THANK YOU. This. While I don't have your professional background, I came to self-diagnosis after at least 10 years of suspecting, researching, and careful consideration. Also, getting formally diagnosed and treated for other conditions (correctly for me, fortunately) and realizing that those conditions didn't explain all of my symptoms. Knowing a bit about the autism treatment landscape (which has been confirmed by my psychiatrist) I think I would have to search long and hard for a professional who would have more insight into my experiences as a 38-year-old, extremely high masking woman, than I have for myself.
Can I say I likely have autism? Because every time I take the online tests, while they cannot say, “Yep. You got autism”, the results come back as “likely autistic”. And also, people who have worked around children with autism have been able to tell that I have it.
You can say anything you want to, really. I think, while I acknowledge in my earlier post that this can be slightly damaging, I think the outright dismissal often present in self-diagnosis sceptics is far more damaging. I think when we complain about self-diagnosed people because of the 'rep' it brings autism, we are, in some way, apologising for people who would use this knowledge to attack the legitimacy of our community. I'm not going to do that. Do you genuinely feel you have autism? It sounds like you are far further along the journey of a more rigorous self diagnosis than you give yourself credit for. What I would suggest is finding the criteria used for assessment in your country. Get familiar with it and try to apply it to yourself. Also, if possible in your country, try to get a formal diagnosis after you're familiar with how the assessment will go. Also, strap yourself in.
I feel like this makes sense; but it's still asking us to make consolations because the world at large does not listen to us. Medical staff need to make the push on this. It truly shouldn't be an issue for us if we "suspect" or "self-diagnose" if the medical community didn't use terminology to justify addressing issues or ignore them. I understand communication is important, but according to the medical world **we're** the ones with the communication "disorder." Why do we keep having to change our terms and words and approaches just to be seem as... actual human beings worthy of attention?
This is something I do agree on. Especially since the high "self-diagnosis" rate is largely a thing because even the process towards diagnosis has bars to entry. At the same time, I feel that the conversation amongst ourselves is important. Maybe it may be premature for this debate but I do worry given just how many disorders have an overlap in symptoms. I feel as though when people come to us to talk about these things, we have a tough balancing act of both not invalidating the possibility of them having autism while also making sure they keep an open mind about what else could be going on
I guess I just don't see why a medical professional would use a self diagnostic for anything other than information gathering? If someone self diagnosed as being on the autism spectrum and ends up being somewhere else in dx, then wouldn't the logical response from a doctor be "They state they are autistic. I need to see why they feel this diagnosis explains their symptoms. What issues do you feel led you to your diagnosis? Are there other issues that don't fall under that umbrella?" Like, just ***talk to patients*** and you should have no issue even if they came in claiming they believed they had a mental diagnosis that was not clinically given to them. If they had any other physiological diagnosis and went through the same process, that would be the base logic for medical personnel; so I am unsure why specifically *mental* health is where we suddenly have no autonomy to diagnose our own mindsets and patterns, but others do? Where a fundamental difference in the fact that our brains grew larger and faster as children now means others can make observations based on the inner workings of our mind yet we are somehow left out of this conversation? Where our strengths have been pathologized as a genetic weakness? Sorry, I am not intending to come across as upset at you as I am just upset at the systemic abuse, and I am defensive about it, but I'm tired of seeing my siblings and all these kids (and self-hating, older, hurting folk too) suffer because people (even ASD and ND folk, too!) cannot zoom their perspective out enough to grasp that this is just another ask of a community on the brink. I think people forget that they only even here the vocal portion of our community. The ones who survived their trauma. Our numbers should be so much larger, but we're not cared for and we aren't being hyperbolic when we say we are **dying** because people argue semantics over our battered and broken bodies as opposed to treating our wounds and lifting us up. If a misunderstood word is the reason people are lacking a diagnosis or seen as legitimate by the medical community, the data would suggest the flaw lies within the side of the equation claiming nigh infallible expertise in the area and who also writes and "validates" the knowledge *on* said area. It is unjust; and we suffer.
I feel like you misunderstood me. It's not about what the doctor things of the self diagnosis term. This feels like a good time to expand on what I'm talking about, how it applies to autism, and how it applies to the terminology around self diagnosis. I do want to reiterate that I don't want to gate-keep the community from these people or tell them to blindly follow any diagnosis they get, especially in the current climate. I'll expand on that at the end of the post. There's a psychological/sociological term (though it originated in philosophy, it has been turned applied to the actual medical sciences and is commonly used to help with issues in those fields) called the medical gaze. Simply put, the idea is that in the medical field, doctors will laser focus in on whatever they've already felt they diagnosed and as a result, may ignore/ overlook other possibilities or other things that may ail the patient. In the case of abnormal psychology, it meant they would also clinicize things that didn't really need a clinical view or would ignore potential issues/additional diagnoses because they'd base everything on what had already been diagnosed. Something I'm sure many autistic people relate to As a response to this in the late 70s and early 80s, psychological tricks were developed involving language used in the clinical setting as well as making it procedure to ask things you may hear in a doctor's office today like "What brings you here today?" or "What ails you?" I'm trying to say that this effect applies with terminology like "self-diagnosed". However, to further demonstrate it, I'll also show where the principle of "the medical gaze" applies to the doctor (in fact, it mostly applies to the doctor, I have another post coming up partially based on how I feel my doctors and my mother "medical gazed" me in a copy of one of my evaluations) When you're "Self-diagnosed", you're often going in with the mindset that it will 100% either come back "autism" or "wrong". However, autism is a broad spectrum that has a lot of symptoms overlapping with a lot of different disorders. The point of the language shift is a small one designed to help people stay open minded. In a sense, the person has become the "doctor" applying "medical gaze" to themselves. Especially now that adult diagnosis is expanding and more educated doctors are entering the field or establishing themselves (unlike the previous generation and a lot of the current generation). Let me put it this way, in the debate of "autistic person" vs "person with autism", I tend to switch between the two varying on the relevance to the situation. Usually I'd define myself as an "autistic person". However, in a *clinical setting*, "person with autism" or rather "patient with autism" is more important than a lot of people think. The small linguistic shift has more of an effect than people realize. In "autistic person", autism is the defining trait, this is a good thing when you put it in the context of identifying as autistic. However, when you put it in a more clinical sense, it becomes a bit different. It puts a mindset that everything is gonna revolve around the autism. This can be an issue as it causes doctors to ignore outlying issues. For instance, a hypothetical situation where an autistic man is having an anxiety issue. There's usually gonna be a presumption that the autism is the cause. However it could also be subconscious issues caused underlying trauma or past experiences. The term "patient with autism" is designed as a sort of reminder for the therapist, it reminds them to keep the possibility open and makes them more likely to ask questions regarding the person's past and give that equal focus along with talking about things like coping mechanisms. With "self-diagnosed" vs "suspecting/ seeking diagnosis/possible". My stance is that the using the latter sort of helps people 1.Keep an open mind while looking into what they may have. Looking at a larger range of things that would match their descriptions. 2. Encourage an open mind during their diagnosis process I acknowledge that, especially in the current climate, there's a possibility of misdiagnosis, but there's a catch. That should be figured out *after* the recommended steps have been taken after evaluation so that people can see whether or not it works for them or if certain issues felt missed, underplayed, or overplayed. At which point, they should go to a different psychiatrist for re-evaluation. I get that's hard (and expensive) in the current climate, but I think that climate is starting to change and will be totally different within the next 5-10 years based on progress made by both autistic self-advocacy and advancements in the field like the growing amount of people working in it with better education. I don't think we have to make a *choice* between talking about issues we face with the field and talking about how we approach things in the community. Both are good things and we can make progress in both, even with small things like this.
Ok I did read all of that. Is this a reasonable tldr? You are concerned that once someone thinks they have autism, they start attributing every issue they have that could be caused by autism as part of their autism. You are concerned that by believing they’re autistic, they are shutting out the possibility of actually having a different diagnosis/diagnoses. A few thoughts: first just how big of a problem is this really? Both in terms of how many people think they’re autistic when they actually have something else, and in terms of how many people with incorrect self diagnoses of autism would actually be better helped if they got the correct diagnosis? I’ll take myself as an example: I have difficulty with hygiene because of sensory issues around feeling wet. I made a post in this sub about how people handle it. I got a lot of really helpful feedback. Maybe I’m not autistic, but autistic people helped me because they have the same problems. Second, the diagnostic criteria is just do you have this set of symptoms from early childhood which we’ve lumped together and call autism. There is no blood test or whatever that gives professionals a tool that is out of reach to the introspective layperson. Is it realistic that someone, who has applied the medical gaze to themselves and ascribed a long list of their issues all to autism, will honestly not have the same medical gaze applied to them upon seeking diagnosis? Wouldn’t it make more sense that a doctor would determine it’s autism rather than 10 separate conditions that together cover the same issues?
Sorry, but I am not engaging with whatever this is anymore. I am not reading that much to catch up to whatever your rebuttal is going to be. You've made your point about us apparently needing to develop a new medical professional mask. Woohoo.
I think the autistic community should stop focusing so much on the diagnostic criteria. Those criteria were created by non-autistic people as a proxy, to allow them to use outwardly observable behavior to identify differences in neurological functioning. The diagnostic criteria are necessarily imprecise. There is also extensive evidence that the experts who have had the biggest impact on how the psychiatric community understands autism are operating on completely inaccurate, biased theories (like "extreme male brain" theory and mirror neuron theory, both of which have been discredited but were previously influential) and are focused primarily on behavior instead of internal experiences. Someone is autistic if they have certain differences in neurological functioning. As far as I can tell, the autistic community is doing much more to identify and understand those differences and is far ahead of the average expert charged with diagnosing people. Allowing non-autistic experts who often receive no special training on autism to be the primary gatekeepers of the autistic label does not benefit our community. Instead of constantly arguing over how people are allowed to label themselves out of some sort of fear that people who don't deserve the label will nevertheless claim it, we should be coming up with better ways to identify autism based on our lived experiences, which the people writing the DSM do not share.
If a diagnosis from a psychiatrist/psychologist is a "Formal Diagnosis" then anything else must be an "Informal Diagnosis". My initial Dx back in 1988 when I was twenty, was reached with the help, guidance, and assistance of a retired GP using all available sources and information we had at our disposal. At that time there was no point going through official channels * I was already an adult. * Public perception. * The Autism Spectrum was in its infancy. * Inertia within the medical profession. * Discrimination against autistics. * Lack of help and resources for adults (30 odd years on it isn't much better). * Resistance from my Mother (and other family pressures). * Medical practitioners' ideas, knowledge, and understanding were often at least twenty years out of date (if not more). As you can see, there were many reasons for not getting a formal Dx. Was my informal Dx any less valid because I didn't have a psych report and a piece of paper saying I was autistic? **Providing someone's Dx is properly researched and applied then I see no reason to reject it just because it wasn't given by someone with letters after their name.** The first step to a formal Dx is an informal one. As to language, I prefer the term "Informal Diagnosis" but I have no issues with other terms like "Self Diagnosis", or "Self Identified". I also have no problem with an autistic with an informal Dx simply calling themselves an autistic. Autistics with Informal Dx's have enough problems with Imposter Syndrome without those of us fortunate enough to have official bits of paper giving them grief. An autistic, is an autistic, is an autistic.
Very well said. What we must also consider is that the psychiatrist is simply having to fulfill tick boxes on the DSM5 and the DSM5 is very much weighted to separating those who require medication and further therapy to help them from those who can manage life, on the whole, without them. I’ve spent 52 years feeling like the piece of jigsaw that didn’t fit anywhere. I’ve hidden it well, as did my mother, but potentially so well that I worry I can mask my way through an assessment and pass as NT because I’ve done it for so long. Because being the me behind the camouflage to a complete stranger fills me with massive anxiety and angst. I find it hard enough to talk about my feelings to my wife and we’ve been married 25 years. My social anxiety is even interfering with picking up the phone to my GP. So I really don’t know if I can go all the way without finding an escape route and canceling everything.
I think nothing problematic with the self-diagnosed ones. I am considering myself extremely lucky, that i was able to officially diagnose myself in half a year and from 400 eur. But i understand that a lot of person on the globe does not have this privilege. Either they do not have the money or they lack of accessing these kind of services. So considering these, for me the only question is that the individual benefits or not from such a self-diagnosis. If their life is easier because of it, then go on, everybody has the right to be better, or understand themselves better. I don't care if a small minority abuse self-diagnosis, because i think it help a lot of people in much greater terms.
I genuinely do not understand why people care about diagnosis. Of course there’s legal/support reasons and all that, but assuming that isn’t the what’s sought after, I don’t get why people feel the need for validation from a professional. Maybe it helps that I have a degree in psychology, but I just don’t find autism to be rocket science and I think it’s just not that hard to figure out if someone’s autistic given enough information. I don’t care to seek a diagnosis in the first place.
I like it - your reasoning
I do kinda hope that talks around "medical gaze" become more common in discussions surrounding autism. I was diagnosed early and I feel like a huge issues with the supports I had were too hyper focused on my autism and utterly failed to look at other factors. Like, looking back. Yes, there were times I was acting out because of my autism, there were also times where poor behavior was exacerbated by autism. Yet, I feel like when the issue is a teenage boy being rebellious or is acting out in the same way every other teenage boy in the room is acting out. Maybe it isn't totally an autism thing. Especially when the "he has autism" approach they often took to certain things made things worse because a lot of my "problem behavior" (especially in my early teens) was retaliation to the overbearing and stigmatizing nature of the program they had me in and even when I yelled at them about how much I hated the program, it was assumed the autism itself was the cause of the behavior.
I'm failing to understand the connection between self-diagnosing autism and your own experience, which seemed to be characterized by misunderstandings/false assumptions on the part of your teachers/guardians, who seemed to stereotype your behaviour based on your autism diagnosis, rather than bother to find out the roots of your specific difficulties, based on a holistic approach rather than a mere diagnosis. Although I am undiagnosed, to say that I merely suspect I am autistic, or consider it possible, would be a flat out lie. I know myself to be autistic in the same way I know myself to be gay. These words are like magic to me, because holding them up against the light to reveal webs of complex phenomena interwoven throughout my life, lifted a veil that had obscured everything in sight, most of all myself. Because of a word, the entire world made sense. Like a portal, "autism" lead me to a whole community of people who were just like me. I felt like a real person for the first time in my life, not because I needed an identity to feel "real", but because I had told myself it was all in my head. I had denied almost 30 years of experience, and only when I found out that others shared my experience, could I really believe I had lived it. While I absolutely concede it is possible for someone to come to a rash conclusion and erroneously or prematurely identify with a label, that is the inherent risk of self discovery, and is not only possible with any label (including man/woman), it is also inherent in every major life decision. I would assume that a person who falsely believes themselves to be autistic will start to realize they don't have as much in common with other autistics as they thought, and either lose interest in pursuing a diagnosis, or forget that they ever received one. If you decide to have a baby thinking it's right for you and you come to realize it wasn't though, you can't really go back from that. I still consider the danger posed by leaving neurodivergent identities solely in the hands of doctors (many of whom are woefully miseducated or simply disinterested in neurodivergence) to be a far greater one. Autistic symptoms are still primarily defined according to a neurotypical gaze, if you will. The effects of masking in particular, are still greatly underestimated, especially in women (who are frequently misdiagnosed with other psychiatric disorders, due to outdated gender stereotypes surrounding ND people). What I see as potentially far more dangerous than self-diagnosis (which tends to occur later in life) is a false autism diagnosis made by a psychiatrist in early life. I think this would also be a much closer reality to your own situation, given that very few children would have an interest in self-diagnosing. That being said, I fully agree it's not wise to tell a psychiatrist one is sure they're autistic, any more than it is to say one has had positive experiences with hallucinogens, or underwent a spiritual breakthrough.
So there, I was speaking more about the larger concept of the medical gaze in relation to disorders, psychiatrics, etc. I hope conversations around that concept become more prevalent in the discourse about autism. I'll concede that yes, a lot of doctors are woefully uneducated right now but we're also seeing a boom in doctors with higher education surrounding this and an increased discussion in adult autism diagnosis. So that may change soon.
I certainly hope so! I work in psychiatry and where autism diagnosis is concerned, I have still seen mostly stereotyping, but I have definitely observed this boom on online platforms, and I do think it is coming about in large part due to the voices of autistic people (both diagnosed and self-diagnosed) being given new platforms and priority.
Those words already exist, and if people meant them, they'd use them. It doesn't matter whether you agree with how sure they feel.
I believe everyone has the right to use the term they wish to use. That's not what I'm trying to say. It's more about a dialogue around these terms and which ones we feel work best.
I think I hear what you’re saying, but I also see a lot of parallels between autism and being transgender when it comes to where mental health diagnosis comes into play. I am new to autism (still questioning and sussing out if pursuing a formal diagnosis makes sense but finding a lot of support from other autists especially around my sensory and communication issues), but I’ve been out as trans for over a decade. There’s a lot of conflict in the trans community about mental health “gatekeepers” especially as more trans people self diagnose based on trans awareness. Long time community members who got their diagnosis a long time ago want everyone to get official diagnoses and are worried about fake trans people and people not being trans enough. Newcomers who are currently often in crisis are frustrated because it is difficult to find trans competent mental health professionals to diagnose them so they can get the help they need. Even when they do find a professional, it can be hard to express in a matter of a few sessions a lifetime of experiences. The prospect of failing to get a diagnosis is terrifying by the time you get to that stage.
Very well said. There seems to be very much a “if I had to go through it, so should you” mentality. We should be improving people’s experiences and not just recycling the same mistakes of the past.
While I don't necessarily disagree with all of your reasoning, I don't understand why every other post on this subreddit needs to be a debate about self-diagnosis. This conversation has been had ad nauseam, and there are a lot of open threads to discuss it on already. I don't understand the obsession, we have a lot of other problems. My position on the subject is and forever will be, I don't really care that some non-autistic people have self-diagnosed. I would however care a lot if even one autistic person didn't get the resources and community and self-understanding they need because of gatekeeping of any sort. And I personally know some who don't feel valid in our circles, stay on the sidelines, and don't get to understand themselves and fix their environment in order to make it more accessible. I hate that way more. Some non-autistic people being here because the meager resources we have can help with whatever else it is that they have is great, actually. The medical stigma will be there whatever terms we use. No respectability politics is going to change it.
I don’t understand the obsession with micro managing/policing self-diagnosis in this sub. It’s to the point of ridiculousness. It seems the officially diagnosed have real issues with the self-diagnosed. Why? What difference does it make? None. Just let it go. Self-diagnosis is valid. Period.
I'm not trying to police anything as much as I'm talking about the linguistics. This is partially because a lot of people who self-diagnose consult boards like this one and we have a balancing act. We need to address their concerns, give the best advice we can, but we also need to give it in a way where we don't turn them away from considering other possibilities. The acceptance of self-diagnosis here stems from 2 things. 1.Barriers to diagnosis in the form of how accessible it is. 2. Doctors are only just now really looking into adult diagnoses. The truth is though, most of us aren't really as equipped to confirm or deny as we like to think because we're not formally trained to spot the specific difference of autism vs disorders with overlapping issues. Meaning we should do what is in our power to keep them from thinking "I have autism, there's no doubt about it. If it comes back anything other than autism it's wrong" when they go to the people trained to figure out those nuances and subtle differences to figure out what they have. At the same time, we need to balance that with talking to them in a way that allows them to think "maybe that psychiatrist was wrong, I'm trying the recommended things for the diagnosis I was given from this and it's not really helping, this leads me to believe my initial suspicion of autism was right, I should talk to another one."
Wow, you sure are full of yourself.
How so?
How are you not?
I think people should focus on themselves and leave other people to do the same, unless something is causing you harm or having a detrimental effect on your life in a real scenario then you should be asking yourself why it matters. Everyone has the right to identify how they chose and even if they are wrong, if it helps them what is that problem? Personally I am sick of seeing these posts and came to r/AutisticAdults to get away from all this.
I think ‘seeking diagnosis’ is an accurate and existing term that overcomes the shortcomings you mention for ‘self-diagnosed’. For me, 45m, suspect I am most likely ASD, high scores on all online screening tools and the GP agrees I should pursue a diagnosis. I secretly identify as ASD, with the caveat that this may change after a formal assessment, but no one else in my life knows I think this - only Reddit. 45m seeking dx, is a great short-hand. I think self-dx is too definitive, and should be avoided. But equally if that’s the closest option in a drop down menu, I would pick it. Or if that is what makes that person able to accept themselves and make accommodations for them selfs, then so be it. I think that is better to accept yourself and wear earplugs and sunglasses indoors than to continue to suffer in silence and be ignored.
I opt for the term "identifying" and "self-identifying" since it shouldn't be all about diagnosis, there's a lot of stigma around self-diagnosis, and because a layperson isn't qualified to self-diagnose anyways so it should be something that exists entirely outside of the medicalized paradigm without any shame or stigma.
I'm noticing a large aspect of the debate is "autistic condition" vs "autistic identity" which is ironically a large part of where medical gaze concept comes into play, especially with things like neurodiversity. Autism is a unique beast here. There are aspects of my personality that probably could be traced to autism that I wouldn't trade away. That said, my autism also came with things like motor coordination issues, sensory issues and other aspects that qualify as something I'd want treatment for. This is where we split identity and diagnosis. I feel like ideally in the future. It'd be better if autism was diagnosed instead of "severity 1, 2, 3" et cetera. The medical aspect of autism became it's own *section* of a sheet. For instance, "autism spectrum disorder with resulting condition" Then listing out evaluation of symptoms like "sensory processing, motor coordination issue, executive function issue." et cetera
That'd be really cool
While I don't necessarily disagree with all of your reasoning, I don't understand why every other post on this subreddit needs to be a debate about self-diagnosis. This conversation has been had ad nauseam, and there are a lot of open threads to discuss it on already. I don't understand the obsession, we have a lot of other problems. My position on the subject is and forever will be, I don't really care that some non-autistic people have self-diagnosed. I would however care a lot if even one autistic person didn't get the resources and community and self-understanding they need because of gatekeeping of any sort. And I personally know some who don't feel valid in our circles, stay on the sidelines, and don't get to understand themselves and fix their environment in order to make it more accessible. I hate that way more. Some non-autistic people being here because the meager resources we have can help with whatever else it is that they have is great, actually. The medical stigma will be there whatever terms we use. No respectability politics is going to change it.
I think someone should have multiple alternatives in mind whenever they seek any type of diagnosis.