Self dx isnt a thing

Unpopular opinion: You can’t self diagnose. The purpose of diagnosing is having someone with knowledge on you suspected disease/disability tell you if you for for sure have it. I’m not denying that people go undiagnosed for various reasons and that is very sad, but hey they aren’t diagnosed. They suspect they have something (which they may have or might not idk im not a professional). You can’t say you are autistic just bc you want to be quirky or you feel like you don’t fit in. All while they say “autism is a spectrum, im high functioning” like ok then can you advocate for those who cannot even live on their own. What are you really doing to help your apparent people? If you want to make serious disabilities into a trend where you can just join a community, then stop making your humiliating tumblr posts and go make a fuckin difference in the world. All of you are minimizing the struggles of thoose less fortunate and to be quite frank its a little bit ableist. Sorry for the rant but yall better reflect.

Edit: Some of y’all misunderstood what I meant. If you thought you had a certain disability and then you went to a professional who confirmed your assumptions, then good for you! I’m glad you got the help you needed. It is important to professionally diagnosed in order to get professional help. Also, if you are high functioning you should use your privilege over lower functioning people witth your disorder in order to make a difference. You don’t need to do this, but is a good thing to do. LASTLY, if you claim to have more education then people who have dedicated their lives and studied countless people with your alledged disability, then you are naive. You might as a lot of experience but at the end of the day you can’t not diagnose yourself just because you have done your research. Go out and comfirm your assumptions if you can please its for your own safety. Thank you.

Pro diagnosed here and annoyed with the OP. Lemme spill this out for you so you realize your gatekeeping is doing more harm here. First off, the shitty functioning labels THAT ARE USELESS…are harmful. They create a false dichotomy of “useful” and “useless” autistic people. Those who need lots of daily help and can’t make their communications understood are assumed incompetent when it’s their caregivers who don’t bother to explore behavior patterns. Ascribing the “low functioning” label to them based on what you observe is harmful. So is “high functioning” because the things we struggle with are seen as laziness rather than something we need help with, so we get discouraged from asking for help when we need it and it becomse a vicious cycle.

Telling people capable of understandable communication who are still figuring themselves out that they “should” be advocating for those who have more support needs is totally unfair. I saw you say they don’t *have* to, but it reads to me as implying they’re somehow bad if they don’t– that’s the message I got, anyway. You don’t put a roof on a building until the foundation and walls are built and able to support it, do you? Same principle here. I kind of view the autistic community as a giant army who is constantly assisting new recruits (newly diagnosed people whether pro or self) while supporting soldiers who aren’t able to fight or who can only fight in short bursts at a time (people with extensive support needs whose communicaitons may or may not be understandable). We’re doing this while passing information to people in other fleets (allistic people who are neurodivergent in ways that don’t include autism) and to the more general population (neurotypical people). Secondly, not everybody has access to a professional– in a perfect world people who selfdx now will one day be able to get a prodx in the future. But there are people who aren’t white, aren’t cis, living in abusive / unsupportive homes and / or unable to afford the cost of seeing a professional to get tested. My hope is all selfdx people use selfdx as a stopgap until they can get a prodx. Thirdly, professionals can get it wrong, too. I see posts where people said they were refused a prodx because they “can socialize” (masking behavior by chatting) and “can make eye contact” (by forcing themselves to). It took till I was 15 to get diagnosed in 1995 because “girls can’t be autistic” so if the pros can get it wrong on a cisgender girl then how much can they screw it up for an adult who isn’t cisgender?

Fourthly, education? Educated people can get it wrong. See above. Also, I think an autistic person knows more about being autistic than a neurotypical. There are nearly (or totally) ‘unexplainable’ internal traits and thought processes that pros will never know about because they aren’t autistic and can’t experience them.

Fifthly, people who selfdx take NOTHING away from people who are prodx'ed. They don’t have access to the accommodations that prodx people have, they don’t have access to the medications if they need them and all they have is community support. The most they can do is buy stim toys, talk to other members of the community and learn ways to cope.

You don’t live anybody else’s life but your own, so thinking you know another person’s brain better than them based on what they write on one website on the internet is logic that is about as sound as a steaming pile of triceratops shit. Now that’s a pile of shit! Telling selfdx people they aren’t valid is removing their community support and that’s removing the ONLY support some of them may have. 

If you’re gonna gatekeep, go buy a fucking gate and keep it instead of telling people they don’t count in this community without a prodx, okay? Okay.

Here’s your gate. Go keep it somewhere safe.

Look I really don’t want to argue with you because most of what you say is compeltly valid and correct. The problem here is that you kinda lost sight of my point (like most people who saw this post). It’s something called confirmation bias when you look for the specific phrases/words that help your arguement and interpret them in a way that would benefit you. Not your fault just psychology. Anyways my point was not that people cannot be disabled w/o a proper diagnosis. It was simply: you can’t call it a diagnosis. This isn’t gate keeping (which also leads to me to believe that you think everything is a community that you can just hop in and out of. Bad word choice I think) At that point you should try your best to get help. Which I understand that some people can’t get help and again that is ok that doesn’t mean you don’t have the disability. Just legally, officially and stuff.

Please stop antagonizing me to promote your personal veiws.

I’d also like to share a little background info about myself now that a bunch of people are pissed off. My sister for the longest time was depressed never went to a doctor until she attempted suicide 4 years ago. She was sure as hell depressed but she wasnt diagnosed nor did she self diagnose herself. The reasons why she didn’t get help is complicated. But back to my story, my sister never denied having depression she knew. Turns out now her doctors are diagnosing her with bipolar. What a plot twist. Which are similar yes but being treated and accommodating for depression is vastly different than bipolar. She is now doing better due to the fact she has gotten the proper help she needed years ago. Just a little food for thought.

Thanks for reading 💖

Your post is pretty clear about “don’t call yourself autistic unless you are pro diagnosed” which is the same thing. Please read again what I said about why some people CAN NOT GET DIAGNOSED for reasons beyond their control. Yes, there are cases where someone’s selfdx is wrong, but I’m pretty sure a majority are right. Kicking everybody out because they might be wrong is just as damaging. I would rather help 20 people who discover they have it wrong rather than risk overlooking the 1 who is right. But people can be misidagnosed…both with autism or with other things. I won’t deny that. I bounced around with doctors saying I had ADHD, ODD, “just a bad child”, and got tested for Turner’s syndrome (which came back negative.) It was a clinical psychologist who put it all together instead of looking at one thing or another and said “autism”. My childhood was doctor’s offices, blood tests, scans and people scratching their heads like I was an experiment gone wrong. I was a very difficult child behaviorally, too, and going to all these doctors made it worse. I hated it so much. But if I knew what I know about autism now when I was 10, you bet your ass I would have selfdx'ed, gone to my mom and gotten a prodx– but we had insurance to cover it. I would’ve been diagnosed 5 years sooner than I was. People selfdxing are looking at the whole picture of themselves. We know ourselves better than anyone else. And guess what? Your sister is probably more sympathetic towards the depression community because of what she’s gone through. EVEN IF somebody is wrong in their selfdx and it’s something else that’s discovered when they can finally see a pro, they can still be an ally for the autistic community because we welcomed them instead of doing what your post seems to be doing, which strongly suggests that what they’re going through isn’t valid enough for you to call it autism unless we have a dx paper saying so. Take what you will from this.

I know someone who was refused a diagnosis, despite meeting all the criteria, because said person had a job, and apparently autistic people don't got jobs I know people trying to get diagnosed, but can't because of professional bias and prejudice, or because they don't have the insurance, or because it would mess up their chances of getting insurance (pre-existing condition; and yeah, this happens outside of the States too) so anti-self-dx'ers can piss off

Autistic Person: I haven’t been diagnosed, but I’m autistic.

Ableist Assholes: I refuse to believe that you’re autistic if you’re not diagnosed.

Autistic Person: Fine. I’m diagnosed.

Ableist Assholes: Autism is overdiagnosed nowadays.

Ableist Assholes: But you’re high functioning. I’m talking about the autistic people who struggle.

Ableist Assholes: I still believe that your problems are caused by laziness and that a little positive thinking will solve your problems.

Ableist Assholes: It’s all in your head. You can do anything if you put your mind to it.

Ableist Assholes: You’ll grow out of it eventually.

I want to reply to this, as the Vice President of the Autism Women's Network. You are welcome and you're not alone. ~Corina Becker

I don’t understand all the hate for self-diagnosis. A lot of what I’ve seen seems to be based on severe misunderstandings of the diagnostic process. As someone who has self-diagnosed and later received the same diagnoses from psychiatric professionals I want to explain what each process was like.

When I was 13 I started having severe mood swings. I would be suicidally depressed for weeks at a time then have a week where I barely slept, was all over the place, and full of energy. Then at 15 I started hallucinating. I had been seeing a psychiatrist off and on since I was 9 and consistently since 13. When the hallucinations began my doctor basically just gave me meds to make them stop but didn’t know what was going on. 

Fast forward 6 years to when I was 21. Despite two stints in a psych ward and experience with almost every antipsychotic available at the time, I still hadn’t received a diagnosis aside from mood disorder NOS (the psych fields way of saying “we know SOMETHING is going on we just don’t know what”). I was done waiting for answers so I began researching what was going on with me. 

After hours and hours spent researching and reading up on every form of psychotic disorder we have a name for, I reached the conclusion that I was schizoaffective. I had read the entire DSM IV. I had researched through multiple sources. I had spent hours at a time over the course of several weeks reading and learning to try to find out what was wrong with me. 

A few months later, I was sent to a different psychiatrist because mine had given up on trying to figure out what was going on. This new psychiatrist sat down with me for 1 hour and asked me questions about childhood, my hallucinations, and my mood swings. After the hour was up, he diagnosed me with schizoaffective disorder. I never told him about my self diagnosis so he wasn’t biased by that. 

I spent many hours over several weeks researching and comparing my traits to that of different disorders. I contemplated my lived experience in relation to a variety of disorders before self diagnosing. My psychiatrist spent only one hour with me before diagnosing. 

Similarly, about a year ago I started suspecting that I have ADHD. I read up on the diagnostic criteria, read accounts from many people with ADHD, talked with friends who have been diagnosed, and more. I thoroughly researched ADHD and reflected about my experiences. I eventually remembered the six hours of psychological testing I went through in high school that showed that it was likely I had ADHD but was refused a diagnosis because I had good grades.

When I talked to my psychiatrist about the suspicion I had ADHD and explained my symptoms, she just said ok and wrote me a prescription. That was it. No extensive testing or psychological evaluation.  Just a five minute conversation.

Diagnosis isn’t always some elaborate event in which the psychiatrist truly gets to know their patient and considers all options before diagnosing. Often times it’s a quick process based on limited information. While someone self-diagnosing may be incorrect, so might the professional. Misdiagnosis is common among psych professionals. They are not magical beings who are always correct. Just as someone may incorrectly self-diagnose due to ignoring information or misconstruing experience, a psychiatrist can be wrong because they are working with what the patient tells them. If a patient is not fully honest or the professional is not truly listening, a patient can be misdiagnosed which, when coming from a medical professional, can actually be dangerous. Misdiagnosis from a professional can lead to incorrect medications which can at best not treat anything while causing side effects and at worst worsen a person’s condition. An incorrect self-diagnosis is unlikely to have serious consequences. 

Stop romanticizing allism!

All uses of “you” are general.

OMG why does everyone keep self-diagnosing themselves with allism? I know actual people with allism and it’s so horrible and sad! They sit too still, they can’t communicate except to use too many words and they act too spontaneously. People with allism are so hard to take care of because they need so much socialization!

I won’t listen to anyone on the internet with allism because they’re too high functioning for it to matter. They aren’t like this person I know. I want everybody to feel sorry for me and what I have to deal with every damn day!

Hey, can the punks who think allism is a trendy diagnosis fuck off now? These allism fakers go around romanticising allism like it’s a Chanel bag and I hate them for saying anything positive about allism or having allism. 

There is nothing good about having allism, so stop this trendy shit! 

If you really had allism you would be miserable every second of every day because I know what you’re experiencing better than you do and your struggles don’t count if I can’t see them!

I’m autistic, but I’m an Allism Expertᵀᴹ and nobody knows more about allism than me!

Note: This post is satire.

What gets me about the anti self-DX crowd is the consistent argument that the professionals spend years learning about this stuff, which is why they know more.

Except… they don’t.

Do you really think that every doctor spends years learning about every single disease, disorder, or whatever? They would literally never graduate. Ask any psych student how much time they spent actually learning about something like autism. Like, the actual number of concrete hours they spent studying autism.

I promise you by the time I am done with my psych degree, I will have spent way, way, more time on understanding autism on my own then I ever did in class, and that’s if I take a class specifically for developmental disorder. And way, way, way, more time understanding my autism in particular than I ever did learning about it in school.

Developmental psychology, by the way, is an elective at my school. I don’t actually have to take the class about autism to get a degree. I don’t actually have to take the class about autism to get the degree that lets me get a clinical license. I don’t actually have to take the class about autism to legally diagnose autism.

What I do have to do is take the core requirements, which include general psych classes that might give me two full days of note taking in a lecture. Maybe double that if you include developmental disorders in general. Maybe double that again if you include all the therapies commonly used on autistics - ABA, occupational therapy, speech therapy, etc.

So maybe 32-48 hours total time? On all things autistic? Because that is going to give me such a good over view of a complex neurology. Yep, yep.

I’m pretty sure I spent that much time in the first week of my self-acceptance learning about autism.

Never mind that you don’t actually have to be taught by a professor in order to learn something. There is such a thing as directed self-study and self-study. Which, by the way, is actually a required part of my degree. Just saying.

My psychiatrist before he resigned literally told me that he thought he knew everything he needed to know about autism, and then I came along and taught him more than he could have ever learned in medical school.

A similar thing also happens in education where people think teachers (especially special education teachers) have so much training in disabilities (particularly autism). Your general education teachers, depending on their state, may be required to take one class on disabilities (New York only requires 1 class and it has some of the strictest teacher certification requirements in the US). And that is the most basic crash course type class because not only do we have to cover the developmental disabilities (including autism, ADHD, and the learning disabilities), but also mental illnesses, and your most common physical disabilities as well as info on deaf and blind students, if you’re lucky. I got exempt from this class because my advisor didn’t see the point of me taking it when I am disabled myself and my on campus job was tutoring fellow disabled students in French and Arabic. Plus I got experience during practicum and student teaching. The most people typically learn in this class is that people first language is the only thing that should ever be used along with other things I like to call “fluff language”. Often I find the abled bodied/neurotypical teacher candidates say that the class was “enlightening”. These are the people with little to no previous exposure to actual disabled people.

Things literally aren’t much better for those getting certified in students with disabilities/special education. In New York, those getting the students with disabilities cert have to take a state mandated workshop on autism. Given I have already sat through 3 state mandated workshops, I can’t imagine the autism one would be more than 1-2 hours long. So the idea that professionals in either mental health or education know better than autistics about autism is absurd.

Self-Diagnosis Resources

(or, Self-Diagnosis Is Relevant, Necessary, and Valid)

[This post is available publicly at Candidly Autistic’s Self-Diagnosis Resources page, with a permanent link available at the top of the web front to Candidly Autistic.]

So, you think you may be autistic. What do you do next? Here are some of the resources that I find helpful in figuring out if you might be autistic as well as a little bit of information about the flaws in professional diagnosis that make self-diagnosis relevant, necessary, and valid.

Self-Diagnosis Tests:

These tests will help you figure out if you are autistic and will help build a body of evidence if you choose to seek professional diagnosis. Some of these tests are standard tests used to help diagnose you by professionals, some have been slightly modified to be more accurate based on how diagnosed autistics have answered, and some are not professional diagnostic tools, but rather tools developed by autistics that have been peer reviewed. You can click the test names next to the bullets to open a new window to the associated test, which all have automatic scoring.

About Self Diagnosis:

There is a lot more to self-diagnosis than whether or it is valid or invalid; we’re talking about something that is very complicated and has a lot of nuance. It has been noted, for example, that there is a very limited body of works studying the difference of autism in boys and girls; as of 2003, only 2% of studies examined gender differences in autism (2). As a result there are large numbers of under- and misdiagnosed women and non-binaries.

Cost is another common barrier to professional diagnosis, with some neuropsychologists charging multiple thousands of dollars. Diagnosis becomes unavailable to the uninsured in places like the United States. In places where healthcare is free, like the UK, there is often an extremely long waiting list to be seen by the appropriate professions. In the meantime, self-diagnosis is the only means available to gain access to necessary support.

There is also a lot of diagnostic bias within the medical community. Even professionals can have preconceived notions about race and gender, and that can affect their ability to properly diagnose individuals that do not fit their expectations. Using gender as an example again, the body of work on autism largely studies males and it inherently weights against the diagnosis of women who display a different phenotype. Professionals simply may not consider the differences because that is how they are trained (3).

Whatever the reason for self-diagnosis, when it is done in good faith it does not harm the autistic community and gives people access to the support they need, when they need it, and it often provides a path to professional diagnosis.

Sources:

(1) Ekblad, L. (2013). Autism, Personality, and Human Diversity: Defining Neurodiversity in an Iterative Process Using Aspie Quiz. SAGE Open, 3(3).

(2) Thompson, T., Caruso, M., & Ellerbeck, K. (2003). Sex matters in autism and other developmental disabilities. Journal of Learning Disabilities, 7(4), 345–362.

(3) Goldman, S. (2013). Opinion: Sex, gender and the diagnosis of autism—A biosocial view of the male preponderance. Research in Autism Spectrum Disorders, 7(6), 675–679.

People who are against (well-informed psychiatric) self-diagnosis because “what if you are wrong?!” confuse me. Do you think psychiatrists are always right??? I’m sorry but psychiatry is a highly subjective, imprecise medical field where a lot of mistakes occur. A lot of times you will see two different specialist, repeat the same story, and get different diagnosis. One of psychiatrists who talked to me thinks I have an eating disorder NOS. Another psychiatrist thinks it’s just a phobia. One or both of them are wrong. So? Doesn’t mean my eating problems aren’t real or aren’t disabling.

Psychiatrists are wrong much more often than doctors who deal with physical illnesses. It’s the nature of the field. You have to accept the possibility of mistake and go with the most likely label. Sometimes people who self-diagnose, sincerely, with a mental illness, are more thorough and precise in their research than actual specialists. Sometimes they are both wrong. It’s a thing that we can’t fix right now. We don’t have precise diagnostic tools yet. We make mistakes. Don’t invalidate and shame people just because there is no blood test for autism or PTSD.

Please remember that the “self diagnoser who spent an hour on webMD/Google/Wikipedia” is a strawman. Most self diagnosis is thoroughly researched, thoroughly questioned, and can take years.

Most of the people who self diagnose using Wikipedia or a single quiz are like…12. In case you weren’t aware, 12 year olds are allowed to mess up, and putting responsibility for supposedly undermining a movement on the backs of young tweens/teens is incredibly fucked up. There’s also a decent chance that they’re STILL right.

So, you know. Fuck off. Stop trying to “protect” me from people who are ON MY SIDE and need my support.

I think something a lot of pro self diagnosis posts miss out is how dangerous it can be to have an official diagnosis ya know? Like I’ve read studies about how prof dx mentally ill people get taken a lot less seriously when talking about physical illness because it will get blamed on the mental illness or thought that they’re exaggerating. Plus an official dx (particularly of psychotic disorders) can make it a lot easier to be involuntarily hospitalised (and therefore abused) by the medical system. Essentially the reasons to self dx are incredibly fuckin valid and go beyond not being able to afford treatment.

Self diagnosis is especially important when:

1. The disability is under-diagnosed.

2. Without the label, it’s impossible to explain your experiences in a way that other people won’t inaccurately think they relate to it.

3. When having the diagnostic label given by doctors is likely to be used to forcibly hospitalize or medicate you, or prevent you from adopting children or keeping custody of your children, as in psychosis.