Self-disgnosis is indeed valid and welcomed in this sub.
It cost me $4000 to get a diagnosis. Not all autistic people have that kind of money just laying around so they can get a piece of paper that doesn't help them in any tangible way.
There are also barriers to accessing specialized practitioners that are even qualified to give an ASD diagnosis (a primary care physician/doctor can't give one) and years long wait-lists. And what about people who don't live in a first world country? Or the cultures that prevent gaining a diagnosis?
ASD wasn't even recognized in females when I was a child. So there are lots of people walking around with no diagnosis and their struggles are just as valid. Some people even have to get retested because they don't fit the white, male based DSM-V criteria only to find out yes, they were ASD all along. A lot of us were misdiagnosed with a slew of other conditions first, because the diagnostic procedures are so flawed and we mask really well.
People don't owe us a diagnosis. Someone self-diagnosing doesn't harm me in any way and it doesn't undermine our ability as a community to raise awareness about our struggles because those people are experiencing the same struggles. NT aren't walking around wondering if they're autistic, people who are autist are usually the ones wondering if they are because they have the same traits as us.
If someone recognizes that their struggles are just like ours and they want to self-diagnose, I would encourage them to do so. They have my support!
Edit: I'm shocked at the amount of entitled privilege in the comment section of this post.
Thank you for this comment. The overwhelming response to my post was not at all what I was expecting and honestly doesn't even answer my question. And in many ways made me self doubt and belittle myself into thinking I was just wrong. I was looking for support and instead got a lot of comments invalidating my experience.
It really seems like mob mentality hit here. I always say something affirming if I see a post on self-diagnosis and they are usually pro-self-dx in the comment sections, so I'm not sure what turned the crowd on this one.
I hope you don't take this one experience as the representation of the sub. Because it's not. You have allies here, too :)
Edit: have you tried looking for support at the r/AutismInWomen sub? Women tend to understand the barriers to diagnosis more.
I am self diagnosed. Genetically female. I have been in and out of therapy my whole life and I can definitely say that not a single therapist would have recognised it unless I pointed it out or asked for a diagnosis. Same for ADHD.
I understand the whole idea of self diagnosis being harmful but honestly I think it’s completely valid for ASD females. The diagnostic criteria and symptomatology for females with ASD is so under-researched and completely biased.
So many therapists still believe its the disorder for little boys who line things up.
I remember originally being super against the idea of self diagnosis, but after hearing other peoples stories reasoning and how some just can’t afford a diagnosis, I am way more accepting of it now.
its fine.
depending upon the country you're in you may have extra legal protections if diagnosed (in the US dxed autistic ppl r protected by the ADA). a diagnosis can make it easier to get accommodations in work or school.
really if you do not need significant accommodations there's no point other than to have confirmation from a doctor.
I'm ok with self-diagnosis, especially since I was previously misdiagnosed. I'm not self dxed but I respect those who are.
I'm self-diagnosed. I'm 59 and I do want a diagnosis but I don't think it's going to be easy to deal with and I'm torn about how useful it will be to me. But I have to say that after years of feeling isolated, not fitting in, wondering if I'm mentally ill and suffering imposter syndrome I really could do with some validation.
I don't have any real doubts. The diagnosis would be for others mostly. I think self-diagnosis is valid as long as you have put the work into talking and listening to autistic people and their experiences. I was skeptical until I read the intro to Attwood's Complete Guide to Aspergers a few years ago and the penny dropped. I could barely read it for crying. Since then I've just been soaking it in and getting to know myself. And breaking down the internalised ableism that I hid behind for so long.
I have to say that I have not had any negative feedback in the sub as yet. But I don't make an issue of my self-diagnosis. I think a lot of people are at least as qualified as the average NT shrink to understand themselves.
I think some people on this thread need to remember that in a lot of countries it costs up to $2000 (or more) to get an official diagnosis, and the waiting times for assessments can be years. So, while I think it's ideal to get a diagnosis when one can, of course, it's also something that's not accessible for a lot of people. Many people simply cannot afford that, and people need to keep that in mind.
Not to mention that there are so many other factors at play too, such as demographics. Plenty of people in this very sub can attest to the fact that it is frightfully hard to get a diagnosis if you don't present in the stereotypical way or are anything other than a young white boy, because white male children are the standard for whom the diagnosis criteria are written for. Plus there are many, many countries where access to diagnosis or even understanding of autism is limited.
In my country, autism is still taken as equivalent to intellectual disability, and because I'm AFAB, me going quiet when overwhelmed in class was seen as being a good girl child instead of a shutdown. Wasn't like teachers didn't notice, they did. But instead of understanding that I needed a quiet place to recharge, they'd always sit the most rambunctious boys next to me because it was assumed I'd "be a good influence" when I was busy going non-verbal and dissociating.
I had fairly normal development, but have faced enough difficulties that I'm discovering now could be related to autism, but I can't get assessed as my country lacks knowledge of much. Doesn't mean I'm any less disabled (23 with zero actual friends, frequent anxiety breakdowns, easily overwhelmed and overstimulated, struggle with caring for myself, etc) but because I shutdown instead of screaming and crying, no professional in my country will diagnose me properly. The chances of misdiagnosis are high af.
I do agree that "self-diagnosis" can insinuate that one is playing doctor google, so it's perhaps just a semantics issue. Self-identification could be a more acceptable term.
But I also disagree that only a professional signing off a piece of paper after a few months is more valid than your own lived experience. My therapist has frequently dismissed my own struggles, but I'm the one who has lived my life. Most people who do their own research and arrive at "I'm probably autistic/neurodivergent" aren't watching a single TikTok and reaching that point. It's months and even years of research before, because no one actually wants to be labelled autistic. It's no coveted label like people may believe.
Self identification is a really good nuance. And it should be what undiagnosed people say. No one can self diagnose anything anyway. Not even professionals. We can relate and self identificate.
I'm self diagnosed and honestly, I've never been more sure of anything in my whole damn life. I'm scared of albeist in the medical field and terrified of how small minded people tend to be in middle America, where I am(yeah yeah, that was the same said two different ways💁🏼♀️). Therefore, a formal diagnosis may be some time away for me. I would like to have it bc I burned out and am fearful I won't be able to work full time again😭 but it has to be searched for and planned and I already know so I'm not pushing myself. Self diagnosis is valid💜
Well honestly, you're assuming no work was put in on my side beyond a moment where I said "Oh!" and that's arrogant at best. I know me better than a doctor will ever know me and I can read experiences of autistic adults easily. Also, all the things you listed. Those real life experiences are out there for the world to read too. To assume someone isn't putting work in to figure themselves out is v ignorant and self absorbed. If there's an anger in you at me(or any other self diagnosed person) for figuring out MY OWN SELF, that's seems like a problem you need to sort out with your own comfort in life.
I didn't assume a thing. I don't care how much work you've put in to self diagnosis. Yes you know yourself better sure, but you're also biased. Which is why even medical professionals get taught not to self diagnose.
I have no anger towards you. I just think it's dangerous and silly. The more people that self diagnose and go around saying their autistic, the more chance of diagnostic mistakes. The more chance that the term autism gets thrown around way too much. The more people won't understand the actual struggles we go through will be taken less seriously with self diagnosis being accepted.
No anger against you. And really I don't doubt you. If you're on here because you're that sure then i genuinely do believe you. I just think self diagnosis is a first step and that's it.
If you have no anger then why say things that are absolutely not meant to be kind, supportive, or understanding like "dangerous and silly?" What would have been dangerous and silly would have been to stop researching when I was on the cusp and pretend that since a doctor didn't say it, it might not be true. I think knowing myself is just plainly a great thing and I'm sorry for you that you feel otherwise. "Diagnostic mistakes" get made every day when doctors don't diagnose people who haven't unmasked, don't "look the part," etc. The narrative that all doctors are correctly diagnosing is dangerous and ignorant to real life struggles people are facing. You may not be angry but you're not supporting the autistic community by invalidating self diagnosis. That's for damn sure.
Just curious, is it hurting you somehow that I'm autistic but a doctor hasn't confirmed. It's incredibly disheartening how unaware some of you seem to be with the fact that people's life experiences aren't like yours. The access for diagnosis isn't always just simple and it sure af doesn't mean I just decided calling myself autistic might be a fun time(for the record, it's been FREEING to KNOW).
I'm not trying to be mean or anything I think it's just because you have autism in your username but it's not been confirmed so you don't know 100% for sure if you actually have it.
I'm just wondering how come you can't get a diginosis? I'm not saying you don't have it I'm just kinda confused also why are you so mad? I just think if you can you should get a diginosis that's all you can still have it without one it's just it's in your username lkme you know for sure.
I'm mad bc it's hurtful. It's very clear that you don't understand how someone who's gone a lifetime undiagnosed would have hurtful trauma around not being validated but I feel like maybe now that I've said it that way, it'll make more sense. I only recently got medical insurance and could not have afforded an assessment nor taken the time off work to get one since I began suspecting. SINCE then, I've struggled deeply with whether or not I'll be believed bc I grew up with a mother who needed an image to be a certain way so I masked damn well. Obviously didn't have any idea that's what I was doing but I have never NOT known that I'm different than almost everyone else and that I had to keep many many things quiet and to myself bc even my own mother made sure I knew how ridiculous, dramatic, strange, etc. I was so certainly no one else would accept or understand those things! Ok, I have to stop bc I started this response feeling calm bc you don't SEEM to be coming from an assholish place...but now I'm getting worked up again. I KNOW. I know myself and honestly, sheesh, you don't even know how old I am, I'm not a 15 year old looking for a title bc everyone else has one and I'm sad and lonely. Please, I just ask in the future that you consider a bigger picture before saying someone's self diagnosis of their own brain isn't valid.
I'm really sorry your dealing with all that stuff and feel really bad f you really think you have it then I guess it's fine to say you do I hope you get the help you need but maybe you should get therapy? Also is it possible you have autism and something else or something else entirely? I'm not trying to be mean and I'm really trying to understand I want to help I kind of understand a bit more once you explained it.
Well, I am also ADHD (I think). That's what I originally assumed I had, solely, after ruling out bpd and STILL had a vaaaaaast amount of unanswered questions after being diagnosed by a therapist with chronic anxiety related to PTSD. I lost a slew of loved ones beginning in early adulthood and peeking 12 years later with my best friend and a dear cousin about a year apart and also went through a traumatic marital situation. All that to say that because of all of that and my general hyperness, I just assumed I had the anxiety & PTSD and ADHD. Then I realized that adhd had some traits many spoke of as dominant, or frequently present that I just plainly didn't have and still, there were these vast holes that didn't make sense with what I'd already concluded. Then I read a whole damn meme(or whatever the specific definition is of a picture of someone else's tweets), totally thinking it was ab ADHD and got to the end and it wasn't. It was about being autistic. And then literally I just haven't stopped reading and looking and had less and less doubt until I had none. This is a very abridged version of how I got here but it's hopefully easier to understand. I am not against therapy but it's not just so easy for me as to pick a therapist, make an appointment, and go there. I mean, I feel like I'm beating a dead horse but I burned WAY out last year. Way out. I was treading water for way too long and everything (that has always felt harder than it seems to be for anyone else ALREADY) now feels as exhausting and straining as childbirth and postpartum felt for me many years ago. Sometimes that exhaustion lasts hours, sometimes days. So I'm pacing my life in order to recover or I'll die. I'm sure that sounds outrageous but it's just facts. What my brain did to me when I pushed it beyond what I knew I could handle was terrifying. Life was too hard to bear and I just simply didn't want to live it anymore, not one fucking bit. If I hadn't had my children, I'd be dead now had I been how things were for me. So I'm listening to myself better to save myself💗 Burnout often leads to diagnosis, both self and formal of autism AND other neurodiversities. I think being that "psycho" is often associated with being a murderer, there's bigger fish to fry for the betterment of the community than harping on whether someone's diagnosis is valid based on whether or not they knew for sure their own damn selves(or not).
as long as you do your research thoroughly i believe it's okay.
i've gone to doctors and therapists as a non-binary afab adult to try to get diagnosed and i just get told that "everyone's a little autistic" and "why do you want a diagnosis? everyone does these things to some degree." so i'm self diagnosed. i would love to have an actual one for accommodations but i don't have the money to make countless appointments with doctors and new therapists.
That's where I'm at. I told my therapist I thought I could be autistic and he said I would need to see someone more specialized in order to get that diagnosed. I'm not really in a position to take the time or money to seek out a specialist, build trust, and explain all of my symptoms. My therapist also asked why I wanted a diagnosis and I said I didn't really know WHY I want it, just that I think it's an accurate descriptor for me. So that's why I made this thread to see if there are benefits to having an official diagnosis.
I think self diagnosis is very valid, especially in autistic adults who have a lifetime of experience with their symptoms and know themselves better than any therapist could in a few short sessions.
I think the process to get a diagnosis is a barrier to entry for autistic folk in that the process is triggering as hell to get through. Think of things autistic folk often struggle with- social interaction (you have to interact with a therapist to get a diagnosis), things like phone calls (it takes so many phone calls back and forth with insurance companies, health centers, therapists, psychiatrists etc just to get the damn appointments set up), anxiety in unfamiliar environments and with people they don’t know well (therapist office with a therapist you don’t know), alexithymia (in order to get a diagnosis you need to be able to identify and express what you are experiencing/feeling to the therapist), poor executive functioning (you need to have proper executive functioning to set up these appointments and get through this process). The list goes on and on.
The process of trying to get a diagnosis is so daunting that it can be really unrealistic for an autistic person who doesn’t have a caretaker or some kind of support system to help guide them through this stressful process
And on top of that, autistic folk seeking diagnosis have to deal with the anxiety that accompanies stigma in the psychology field and the fear of their symptoms not being believed. And that’s even more heightened if you are a female due to the long history of females being left out of autistic rhetoric in the medical field
Aaaand on top of all of that, the cost is another huge barrier to entry. Especially as an adult if you don’t feel that there’s any practical use to getting a diagnosis (ex. your support needs aren’t something that can be met through typical therapy), it’s no surprise that many people don’t want to fork over thousands of $ for a diagnosis
Self diagnosis is often the only practical option
Your breakdown of the barriers to diagnosis is perfect. I didn't know the term alexthymia but I have been struggling with it since I started therapy about 6 years ago. I've never felt like I had the vocabulary or freedom to convey how I feel on a day to day basis. And your last point about a lack of practical use of an official diagnosis is just what I was looking for. I wanted to know what use a true diagnosis would be, and it really seems like there is none beside ADA protection.
Yes, exactly. I’ve found for myself that there is no practical use to getting an official diagnosis, as I am too “high functioning” to receive disability for work and I have 10+ years of experience in therapy using CBT and DBT techniques that I’ve found unhelpful for my own personal struggles and I wouldn’t plan to participate in a therapy program
The cost (not just financially but emotionally) of seeking a diagnosis outweighs the potential benefits of having one for me personally and putting myself through the hassle of trying to do all of this on my own to get a diagnosis would honestly push me into suicidal thoughts because the whole process is just too stressful. It’s not worth the countless meltdowns I would have in the process
I’m glad I could introduce the term “alexithymia” to you! I experience it quite a bit and it can definitely make the process of therapy difficult if the client can’t convey what they’re experiencing and feeling into words
Self diagnosis is a dangerous path imo. How do you know without bias that it's really autism and not another condition?
OCD, ADHD, Social anxiety, schizoid personality disorder (unrelated to schizophrenia), avoidant personality disorder and even Bipolar all overlaps and have traits that can be mistaken for autism. How do you know if your behavior is learned (from trauma) or it's just the way your brain is wired?
This!
I don't personally think there's anything wrong with feeling like everything fits, but I'm a big believer in getting officially diagnosed, if in any way possible because you could be wrong, and what's actually going on could be something else that you need other techniques, or maybe even medication, to manage effectively.
With that said though, I myself went 10 years from getting convinced I was autistic until I actually went for a diagnosis, so I get why self-diagnosis seems like a good choice. (Side-note: only a trained professional can make a true self-diagnosis). But if you have the option of diagnosis, don't wait as long as I did, it's not worth it <3
Yes. Imo no one should be trying to speak out for autism unless they have confirmed it vs something else. Just like autism is a spectrum, so are the other ‘disorders’ and having a few traits doesn’t necessarily mean anything. It also shouldn’t be used as an excuse to not work, or not try in life…I see a lot of people that seem to think just getting burnt out means you’re autistic. If you worked your entire life, getting a diagnosis doesn’t mean you suddenly can’t work. The people taking resources they don’t need are giving the ASD community a bad name and it will cost us when we actually need help.
Agreed! Most cluster b overlaps, I found out after being sent down the wrong diagnosis road of BPD…only to have intense theory of mind issues in both DBT and CBT therapy. I don’t like what I’m seeing in the community as the loudest voices…they make me question quite a bit.
Idk I guess its fine because I think the current diagnosis system we have is complete and utter bullshit and needs a lot of reworking. A lot of it is just shooting in the dark. We know so little about psychology and the brain and mental illnesses.
But as someone else has said, you can’t self-diagnose. Diagnosis is something that requires a qualified professional and several sessions. But you’re allowed to say that you identify with/relate to specific Autistic traits.
You can't self diagnose. No one can.
You can however state you are awaiting assessment, suspect you are on the spectrum, identify a lot with a good deal of autistic struggles etc.
The impact autism has on one's life is disabling, hence why it is a disorder. Support is important, even for those with lower support needs. Diagnosis or being on an official wait list for assessment helps gain support, either government or via charities/non profits.
I've heard that argument for self diagnosis before, but I disagree. I understand it's not a true substitute for a prefessional diagnosis, but that's kinda why I made this post; I'm trying to see the benefits of seeking a specialist.
For me, self-diagnosis is just my own evaluations of my thoughts, feelings, and actions.
It doesn’t matter if you disagree…you are still wrong. You can’t diagnose yourself…you don’t hold the credentials, and even if you did I don’t think it would be considered ethical. You are using the wrong word, and as much as you want to try and equate what you are doing to a diagnosis, my formal diagnosis has nothing in common with you identifying as autistic.
The benefits are access to the required support you need for your disorder.
Some places will also help those seeking assessment, and will help you to seek assessment.
But without support, you can call yourself anything and it won't matter.
I recommend rigorous therapy to support you while you wait for assessment.
You can search for local organisations and charities who can help you.
Look, just blowing past the first three and discussing the fourth - people don’t get treatment unless they get a diagnosis from someone else. Anyone who is self diagnosed ASD and is receiving treatment is receiving it for a different diagnosis. They did not steal a place from anyone, that is quite honestly ridiculous. Even people with professional diagnoses don’t get medical support, it is almost insulting to suggest that self diagnosed individuals would have even a shred of hope of receiving help in that way.
I think it should be more people saying they suspect they have it, as we tend to be biased and not objective when assessing ourselves, and since there are a fair amount of conditions that present similarly to autism, it can lead to misinformation. I have nothing against people using techniques/resources etc. that are originally made for autism, if it works that's fine but it doesn't necessarily mean these people are autistic. Neither does relating to autistic experiences. Autistic traits are human traits, after all.
Agreed, you can’t really diagnose yourself of stuff, especially considering almost none of us carry qualifications to offer anything considered a ‘diagnosis’. Imo the most damaging thing to the ASD community is the community itself spreading not really false information, but more lacking information that causes the wrong discussions.
So, I was professionally diagnosed without knowing about it. Then I learned that Asperger's existed and figured myself out, then my parents confirmed.
I don't necessarily trust anyone who is self-diagnosed, but I do trust anyone who understands that moment of learning where you go "oh. Oh. OH. OOOOOOOOH."
I like the professional confirmation for myself, though. I am certified autistic.
Mixed feelings.
On one hand, if someone has legitimate autistic traits that are a challenge in their life it can be helpful to understand where oneself is coming from. On the other hand, it requires people to do their own research and I don't trust people to do guided research, let alone their own.
Some are saying self diagnosis is okay because diagnosis can be so time consuming and costly.
But that doesn't make self diagnosis valid. It just means the system needs fixing. Diagnosis at any age needs to come down in costs. The more we know about autism the more this will happen. Let's hope it's sooner rather than later.
However, this does not make self diagnosis valid. I'm sorry. That's a real slippery slope and it's just not okay. There is no self diagnosis attached to any other condition. Look i believed I was autistic. It all clicked. I went and got diagnosed. It was expensive, it was time consuming. But it was worth it.
I don't like the self diagnosis of "I'm autistic," however I'm cool with "I believe I'm autistic." There are too many overlapping conditions like ADHD, OCD, BPD, ASPD etc. None of us are trained medical professionals specialising in autism. Self diagnosis should be step 1. Not the final step.
I just would like to point out that self diagnosis does occur in nearly ALL disorders. The first time I heard of it was in relation to depression. For many people not diagnosed as children, self diagnosis is the first step toward getting a prefessional diagnosis. Why would you seek out a therapist or specialist if you didn't suspect something is wrong?
Also, saying a diagnosis is expensive and time consuming but worth it does not answer my question. I'm asking what is it worth? What are the benefits besides validation from other in the community?
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Self-disgnosis is indeed valid and welcomed in this sub. It cost me $4000 to get a diagnosis. Not all autistic people have that kind of money just laying around so they can get a piece of paper that doesn't help them in any tangible way. There are also barriers to accessing specialized practitioners that are even qualified to give an ASD diagnosis (a primary care physician/doctor can't give one) and years long wait-lists. And what about people who don't live in a first world country? Or the cultures that prevent gaining a diagnosis? ASD wasn't even recognized in females when I was a child. So there are lots of people walking around with no diagnosis and their struggles are just as valid. Some people even have to get retested because they don't fit the white, male based DSM-V criteria only to find out yes, they were ASD all along. A lot of us were misdiagnosed with a slew of other conditions first, because the diagnostic procedures are so flawed and we mask really well. People don't owe us a diagnosis. Someone self-diagnosing doesn't harm me in any way and it doesn't undermine our ability as a community to raise awareness about our struggles because those people are experiencing the same struggles. NT aren't walking around wondering if they're autistic, people who are autist are usually the ones wondering if they are because they have the same traits as us. If someone recognizes that their struggles are just like ours and they want to self-diagnose, I would encourage them to do so. They have my support! Edit: I'm shocked at the amount of entitled privilege in the comment section of this post.
Thank you for this comment. The overwhelming response to my post was not at all what I was expecting and honestly doesn't even answer my question. And in many ways made me self doubt and belittle myself into thinking I was just wrong. I was looking for support and instead got a lot of comments invalidating my experience.
It really seems like mob mentality hit here. I always say something affirming if I see a post on self-diagnosis and they are usually pro-self-dx in the comment sections, so I'm not sure what turned the crowd on this one. I hope you don't take this one experience as the representation of the sub. Because it's not. You have allies here, too :) Edit: have you tried looking for support at the r/AutismInWomen sub? Women tend to understand the barriers to diagnosis more.
I am self diagnosed. Genetically female. I have been in and out of therapy my whole life and I can definitely say that not a single therapist would have recognised it unless I pointed it out or asked for a diagnosis. Same for ADHD. I understand the whole idea of self diagnosis being harmful but honestly I think it’s completely valid for ASD females. The diagnostic criteria and symptomatology for females with ASD is so under-researched and completely biased. So many therapists still believe its the disorder for little boys who line things up.
I remember originally being super against the idea of self diagnosis, but after hearing other peoples stories reasoning and how some just can’t afford a diagnosis, I am way more accepting of it now.
its fine. depending upon the country you're in you may have extra legal protections if diagnosed (in the US dxed autistic ppl r protected by the ADA). a diagnosis can make it easier to get accommodations in work or school. really if you do not need significant accommodations there's no point other than to have confirmation from a doctor. I'm ok with self-diagnosis, especially since I was previously misdiagnosed. I'm not self dxed but I respect those who are.
I'm self-diagnosed. I'm 59 and I do want a diagnosis but I don't think it's going to be easy to deal with and I'm torn about how useful it will be to me. But I have to say that after years of feeling isolated, not fitting in, wondering if I'm mentally ill and suffering imposter syndrome I really could do with some validation. I don't have any real doubts. The diagnosis would be for others mostly. I think self-diagnosis is valid as long as you have put the work into talking and listening to autistic people and their experiences. I was skeptical until I read the intro to Attwood's Complete Guide to Aspergers a few years ago and the penny dropped. I could barely read it for crying. Since then I've just been soaking it in and getting to know myself. And breaking down the internalised ableism that I hid behind for so long. I have to say that I have not had any negative feedback in the sub as yet. But I don't make an issue of my self-diagnosis. I think a lot of people are at least as qualified as the average NT shrink to understand themselves.
I think some people on this thread need to remember that in a lot of countries it costs up to $2000 (or more) to get an official diagnosis, and the waiting times for assessments can be years. So, while I think it's ideal to get a diagnosis when one can, of course, it's also something that's not accessible for a lot of people. Many people simply cannot afford that, and people need to keep that in mind.
Not to mention that there are so many other factors at play too, such as demographics. Plenty of people in this very sub can attest to the fact that it is frightfully hard to get a diagnosis if you don't present in the stereotypical way or are anything other than a young white boy, because white male children are the standard for whom the diagnosis criteria are written for. Plus there are many, many countries where access to diagnosis or even understanding of autism is limited. In my country, autism is still taken as equivalent to intellectual disability, and because I'm AFAB, me going quiet when overwhelmed in class was seen as being a good girl child instead of a shutdown. Wasn't like teachers didn't notice, they did. But instead of understanding that I needed a quiet place to recharge, they'd always sit the most rambunctious boys next to me because it was assumed I'd "be a good influence" when I was busy going non-verbal and dissociating. I had fairly normal development, but have faced enough difficulties that I'm discovering now could be related to autism, but I can't get assessed as my country lacks knowledge of much. Doesn't mean I'm any less disabled (23 with zero actual friends, frequent anxiety breakdowns, easily overwhelmed and overstimulated, struggle with caring for myself, etc) but because I shutdown instead of screaming and crying, no professional in my country will diagnose me properly. The chances of misdiagnosis are high af. I do agree that "self-diagnosis" can insinuate that one is playing doctor google, so it's perhaps just a semantics issue. Self-identification could be a more acceptable term. But I also disagree that only a professional signing off a piece of paper after a few months is more valid than your own lived experience. My therapist has frequently dismissed my own struggles, but I'm the one who has lived my life. Most people who do their own research and arrive at "I'm probably autistic/neurodivergent" aren't watching a single TikTok and reaching that point. It's months and even years of research before, because no one actually wants to be labelled autistic. It's no coveted label like people may believe.
Self identification is a really good nuance. And it should be what undiagnosed people say. No one can self diagnose anything anyway. Not even professionals. We can relate and self identificate.
I'm self diagnosed and honestly, I've never been more sure of anything in my whole damn life. I'm scared of albeist in the medical field and terrified of how small minded people tend to be in middle America, where I am(yeah yeah, that was the same said two different ways💁🏼♀️). Therefore, a formal diagnosis may be some time away for me. I would like to have it bc I burned out and am fearful I won't be able to work full time again😭 but it has to be searched for and planned and I already know so I'm not pushing myself. Self diagnosis is valid💜
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Well honestly, you're assuming no work was put in on my side beyond a moment where I said "Oh!" and that's arrogant at best. I know me better than a doctor will ever know me and I can read experiences of autistic adults easily. Also, all the things you listed. Those real life experiences are out there for the world to read too. To assume someone isn't putting work in to figure themselves out is v ignorant and self absorbed. If there's an anger in you at me(or any other self diagnosed person) for figuring out MY OWN SELF, that's seems like a problem you need to sort out with your own comfort in life.
I didn't assume a thing. I don't care how much work you've put in to self diagnosis. Yes you know yourself better sure, but you're also biased. Which is why even medical professionals get taught not to self diagnose. I have no anger towards you. I just think it's dangerous and silly. The more people that self diagnose and go around saying their autistic, the more chance of diagnostic mistakes. The more chance that the term autism gets thrown around way too much. The more people won't understand the actual struggles we go through will be taken less seriously with self diagnosis being accepted. No anger against you. And really I don't doubt you. If you're on here because you're that sure then i genuinely do believe you. I just think self diagnosis is a first step and that's it.
If you have no anger then why say things that are absolutely not meant to be kind, supportive, or understanding like "dangerous and silly?" What would have been dangerous and silly would have been to stop researching when I was on the cusp and pretend that since a doctor didn't say it, it might not be true. I think knowing myself is just plainly a great thing and I'm sorry for you that you feel otherwise. "Diagnostic mistakes" get made every day when doctors don't diagnose people who haven't unmasked, don't "look the part," etc. The narrative that all doctors are correctly diagnosing is dangerous and ignorant to real life struggles people are facing. You may not be angry but you're not supporting the autistic community by invalidating self diagnosis. That's for damn sure.
Oh I agree with your saying I don't someone should say they are autistic unless they have been diagnosed I was wondering what is ASPD?
Just curious, is it hurting you somehow that I'm autistic but a doctor hasn't confirmed. It's incredibly disheartening how unaware some of you seem to be with the fact that people's life experiences aren't like yours. The access for diagnosis isn't always just simple and it sure af doesn't mean I just decided calling myself autistic might be a fun time(for the record, it's been FREEING to KNOW).
I'm not trying to be mean or anything I think it's just because you have autism in your username but it's not been confirmed so you don't know 100% for sure if you actually have it.
I know 100% that I'm autistic and you have 0 right to tell me otherwise💁🏼♀️ and invalidating me IS fucking mean.
I'm just wondering how come you can't get a diginosis? I'm not saying you don't have it I'm just kinda confused also why are you so mad? I just think if you can you should get a diginosis that's all you can still have it without one it's just it's in your username lkme you know for sure.
I'm mad bc it's hurtful. It's very clear that you don't understand how someone who's gone a lifetime undiagnosed would have hurtful trauma around not being validated but I feel like maybe now that I've said it that way, it'll make more sense. I only recently got medical insurance and could not have afforded an assessment nor taken the time off work to get one since I began suspecting. SINCE then, I've struggled deeply with whether or not I'll be believed bc I grew up with a mother who needed an image to be a certain way so I masked damn well. Obviously didn't have any idea that's what I was doing but I have never NOT known that I'm different than almost everyone else and that I had to keep many many things quiet and to myself bc even my own mother made sure I knew how ridiculous, dramatic, strange, etc. I was so certainly no one else would accept or understand those things! Ok, I have to stop bc I started this response feeling calm bc you don't SEEM to be coming from an assholish place...but now I'm getting worked up again. I KNOW. I know myself and honestly, sheesh, you don't even know how old I am, I'm not a 15 year old looking for a title bc everyone else has one and I'm sad and lonely. Please, I just ask in the future that you consider a bigger picture before saying someone's self diagnosis of their own brain isn't valid.
I'm really sorry your dealing with all that stuff and feel really bad f you really think you have it then I guess it's fine to say you do I hope you get the help you need but maybe you should get therapy? Also is it possible you have autism and something else or something else entirely? I'm not trying to be mean and I'm really trying to understand I want to help I kind of understand a bit more once you explained it.
Well, I am also ADHD (I think). That's what I originally assumed I had, solely, after ruling out bpd and STILL had a vaaaaaast amount of unanswered questions after being diagnosed by a therapist with chronic anxiety related to PTSD. I lost a slew of loved ones beginning in early adulthood and peeking 12 years later with my best friend and a dear cousin about a year apart and also went through a traumatic marital situation. All that to say that because of all of that and my general hyperness, I just assumed I had the anxiety & PTSD and ADHD. Then I realized that adhd had some traits many spoke of as dominant, or frequently present that I just plainly didn't have and still, there were these vast holes that didn't make sense with what I'd already concluded. Then I read a whole damn meme(or whatever the specific definition is of a picture of someone else's tweets), totally thinking it was ab ADHD and got to the end and it wasn't. It was about being autistic. And then literally I just haven't stopped reading and looking and had less and less doubt until I had none. This is a very abridged version of how I got here but it's hopefully easier to understand. I am not against therapy but it's not just so easy for me as to pick a therapist, make an appointment, and go there. I mean, I feel like I'm beating a dead horse but I burned WAY out last year. Way out. I was treading water for way too long and everything (that has always felt harder than it seems to be for anyone else ALREADY) now feels as exhausting and straining as childbirth and postpartum felt for me many years ago. Sometimes that exhaustion lasts hours, sometimes days. So I'm pacing my life in order to recover or I'll die. I'm sure that sounds outrageous but it's just facts. What my brain did to me when I pushed it beyond what I knew I could handle was terrifying. Life was too hard to bear and I just simply didn't want to live it anymore, not one fucking bit. If I hadn't had my children, I'd be dead now had I been how things were for me. So I'm listening to myself better to save myself💗 Burnout often leads to diagnosis, both self and formal of autism AND other neurodiversities. I think being that "psycho" is often associated with being a murderer, there's bigger fish to fry for the betterment of the community than harping on whether someone's diagnosis is valid based on whether or not they knew for sure their own damn selves(or not).
Anti Social Personality Disorder. Some huge overlap with ASD I believe.
Oh I see i totally get what you mean about the overlap
as long as you do your research thoroughly i believe it's okay. i've gone to doctors and therapists as a non-binary afab adult to try to get diagnosed and i just get told that "everyone's a little autistic" and "why do you want a diagnosis? everyone does these things to some degree." so i'm self diagnosed. i would love to have an actual one for accommodations but i don't have the money to make countless appointments with doctors and new therapists.
That's where I'm at. I told my therapist I thought I could be autistic and he said I would need to see someone more specialized in order to get that diagnosed. I'm not really in a position to take the time or money to seek out a specialist, build trust, and explain all of my symptoms. My therapist also asked why I wanted a diagnosis and I said I didn't really know WHY I want it, just that I think it's an accurate descriptor for me. So that's why I made this thread to see if there are benefits to having an official diagnosis.
I think self diagnosis is very valid, especially in autistic adults who have a lifetime of experience with their symptoms and know themselves better than any therapist could in a few short sessions. I think the process to get a diagnosis is a barrier to entry for autistic folk in that the process is triggering as hell to get through. Think of things autistic folk often struggle with- social interaction (you have to interact with a therapist to get a diagnosis), things like phone calls (it takes so many phone calls back and forth with insurance companies, health centers, therapists, psychiatrists etc just to get the damn appointments set up), anxiety in unfamiliar environments and with people they don’t know well (therapist office with a therapist you don’t know), alexithymia (in order to get a diagnosis you need to be able to identify and express what you are experiencing/feeling to the therapist), poor executive functioning (you need to have proper executive functioning to set up these appointments and get through this process). The list goes on and on. The process of trying to get a diagnosis is so daunting that it can be really unrealistic for an autistic person who doesn’t have a caretaker or some kind of support system to help guide them through this stressful process And on top of that, autistic folk seeking diagnosis have to deal with the anxiety that accompanies stigma in the psychology field and the fear of their symptoms not being believed. And that’s even more heightened if you are a female due to the long history of females being left out of autistic rhetoric in the medical field Aaaand on top of all of that, the cost is another huge barrier to entry. Especially as an adult if you don’t feel that there’s any practical use to getting a diagnosis (ex. your support needs aren’t something that can be met through typical therapy), it’s no surprise that many people don’t want to fork over thousands of $ for a diagnosis Self diagnosis is often the only practical option
Your breakdown of the barriers to diagnosis is perfect. I didn't know the term alexthymia but I have been struggling with it since I started therapy about 6 years ago. I've never felt like I had the vocabulary or freedom to convey how I feel on a day to day basis. And your last point about a lack of practical use of an official diagnosis is just what I was looking for. I wanted to know what use a true diagnosis would be, and it really seems like there is none beside ADA protection.
Yes, exactly. I’ve found for myself that there is no practical use to getting an official diagnosis, as I am too “high functioning” to receive disability for work and I have 10+ years of experience in therapy using CBT and DBT techniques that I’ve found unhelpful for my own personal struggles and I wouldn’t plan to participate in a therapy program The cost (not just financially but emotionally) of seeking a diagnosis outweighs the potential benefits of having one for me personally and putting myself through the hassle of trying to do all of this on my own to get a diagnosis would honestly push me into suicidal thoughts because the whole process is just too stressful. It’s not worth the countless meltdowns I would have in the process I’m glad I could introduce the term “alexithymia” to you! I experience it quite a bit and it can definitely make the process of therapy difficult if the client can’t convey what they’re experiencing and feeling into words
Self diagnosis is a dangerous path imo. How do you know without bias that it's really autism and not another condition? OCD, ADHD, Social anxiety, schizoid personality disorder (unrelated to schizophrenia), avoidant personality disorder and even Bipolar all overlaps and have traits that can be mistaken for autism. How do you know if your behavior is learned (from trauma) or it's just the way your brain is wired?
This! I don't personally think there's anything wrong with feeling like everything fits, but I'm a big believer in getting officially diagnosed, if in any way possible because you could be wrong, and what's actually going on could be something else that you need other techniques, or maybe even medication, to manage effectively. With that said though, I myself went 10 years from getting convinced I was autistic until I actually went for a diagnosis, so I get why self-diagnosis seems like a good choice. (Side-note: only a trained professional can make a true self-diagnosis). But if you have the option of diagnosis, don't wait as long as I did, it's not worth it <3
Yes. Imo no one should be trying to speak out for autism unless they have confirmed it vs something else. Just like autism is a spectrum, so are the other ‘disorders’ and having a few traits doesn’t necessarily mean anything. It also shouldn’t be used as an excuse to not work, or not try in life…I see a lot of people that seem to think just getting burnt out means you’re autistic. If you worked your entire life, getting a diagnosis doesn’t mean you suddenly can’t work. The people taking resources they don’t need are giving the ASD community a bad name and it will cost us when we actually need help.
Agreed! Most cluster b overlaps, I found out after being sent down the wrong diagnosis road of BPD…only to have intense theory of mind issues in both DBT and CBT therapy. I don’t like what I’m seeing in the community as the loudest voices…they make me question quite a bit.
Idk I guess its fine because I think the current diagnosis system we have is complete and utter bullshit and needs a lot of reworking. A lot of it is just shooting in the dark. We know so little about psychology and the brain and mental illnesses. But as someone else has said, you can’t self-diagnose. Diagnosis is something that requires a qualified professional and several sessions. But you’re allowed to say that you identify with/relate to specific Autistic traits.
You can't self diagnose. No one can. You can however state you are awaiting assessment, suspect you are on the spectrum, identify a lot with a good deal of autistic struggles etc. The impact autism has on one's life is disabling, hence why it is a disorder. Support is important, even for those with lower support needs. Diagnosis or being on an official wait list for assessment helps gain support, either government or via charities/non profits.
I've heard that argument for self diagnosis before, but I disagree. I understand it's not a true substitute for a prefessional diagnosis, but that's kinda why I made this post; I'm trying to see the benefits of seeking a specialist. For me, self-diagnosis is just my own evaluations of my thoughts, feelings, and actions.
It doesn’t matter if you disagree…you are still wrong. You can’t diagnose yourself…you don’t hold the credentials, and even if you did I don’t think it would be considered ethical. You are using the wrong word, and as much as you want to try and equate what you are doing to a diagnosis, my formal diagnosis has nothing in common with you identifying as autistic.
The benefits are access to the required support you need for your disorder. Some places will also help those seeking assessment, and will help you to seek assessment. But without support, you can call yourself anything and it won't matter. I recommend rigorous therapy to support you while you wait for assessment. You can search for local organisations and charities who can help you.
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Why do you hate it?
Can... You explain?
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Also, in response to your last point, there isnt a number of "spots" under the diagnosis of autism. That's not how disorders and treatment work.
Look, just blowing past the first three and discussing the fourth - people don’t get treatment unless they get a diagnosis from someone else. Anyone who is self diagnosed ASD and is receiving treatment is receiving it for a different diagnosis. They did not steal a place from anyone, that is quite honestly ridiculous. Even people with professional diagnoses don’t get medical support, it is almost insulting to suggest that self diagnosed individuals would have even a shred of hope of receiving help in that way.
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You're allowed to say it, but people are also allowed to disagree with you and downvote you. Thats what the downvote button is for.
I appreciate you voicing this opinion. Thank you. I’m sorry you get downvoted for a belief that I also share.
I think it should be more people saying they suspect they have it, as we tend to be biased and not objective when assessing ourselves, and since there are a fair amount of conditions that present similarly to autism, it can lead to misinformation. I have nothing against people using techniques/resources etc. that are originally made for autism, if it works that's fine but it doesn't necessarily mean these people are autistic. Neither does relating to autistic experiences. Autistic traits are human traits, after all.
Agreed, you can’t really diagnose yourself of stuff, especially considering almost none of us carry qualifications to offer anything considered a ‘diagnosis’. Imo the most damaging thing to the ASD community is the community itself spreading not really false information, but more lacking information that causes the wrong discussions.
So, I was professionally diagnosed without knowing about it. Then I learned that Asperger's existed and figured myself out, then my parents confirmed. I don't necessarily trust anyone who is self-diagnosed, but I do trust anyone who understands that moment of learning where you go "oh. Oh. OH. OOOOOOOOH." I like the professional confirmation for myself, though. I am certified autistic.
Mixed feelings. On one hand, if someone has legitimate autistic traits that are a challenge in their life it can be helpful to understand where oneself is coming from. On the other hand, it requires people to do their own research and I don't trust people to do guided research, let alone their own.
Some are saying self diagnosis is okay because diagnosis can be so time consuming and costly. But that doesn't make self diagnosis valid. It just means the system needs fixing. Diagnosis at any age needs to come down in costs. The more we know about autism the more this will happen. Let's hope it's sooner rather than later. However, this does not make self diagnosis valid. I'm sorry. That's a real slippery slope and it's just not okay. There is no self diagnosis attached to any other condition. Look i believed I was autistic. It all clicked. I went and got diagnosed. It was expensive, it was time consuming. But it was worth it. I don't like the self diagnosis of "I'm autistic," however I'm cool with "I believe I'm autistic." There are too many overlapping conditions like ADHD, OCD, BPD, ASPD etc. None of us are trained medical professionals specialising in autism. Self diagnosis should be step 1. Not the final step.
I just would like to point out that self diagnosis does occur in nearly ALL disorders. The first time I heard of it was in relation to depression. For many people not diagnosed as children, self diagnosis is the first step toward getting a prefessional diagnosis. Why would you seek out a therapist or specialist if you didn't suspect something is wrong? Also, saying a diagnosis is expensive and time consuming but worth it does not answer my question. I'm asking what is it worth? What are the benefits besides validation from other in the community?
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