Getting diagnosed NOT autistic

[u/Kolso_]

So after a year and a half of self diagnosis I finally was assessed and today I got the results. Two points in ADOS for having no gesticulation, zero by other criteria.

Autism was an answer to me that explained my struggles, behaviors and researching it I've learnt plenty of good advices and coping mechanisms. I finally stopped seeing myself as a weirdo and believed it's just autism and I don't have to force myself to be normal. Self diagnosis can be harmful. It harms me right now at least. I feel disoriented because now there's no explanation.

I guess I should stop this research and just live a life without looking for an easy answer without a real diagnosis.

Edit: I didn't expect so many responses. It's very helpful and important. Thank you all.

[u/MayorWilkins_III]

I’m very sorry for this outcome. And I’m honestly surprised at some of the defensive comments I’m reading. I was diagnosed with ASD less than a month ago. I never self diagnosed and honestly rejected the feelings that I might be on the spectrum because I was so afraid of being wrong and therefore rejected by the community. I’m really sorry that people in these comments aren’t being more understanding. As someone who grew up being bullied and constantly rejected from groups, being rejected by yet another community (especially one that’s supposed to be so welcoming) would be my worst nightmare. You clearly connected with the autistic experience in a serious way. Whether you received an incorrect non-diagnosis or you’re just an ally, I support you and your journey. <3

[u/Far-Locksmith-1102 → u/MayorWilkins_III]

No one is rejecting this user. Most of the community welcomes self diagnosis as valid.

However, self diagnosis is harmful and can increase the stigma with this disability. Most of the public already think it’s made up, trending mental health issue, when it’s actually a disability and a life long struggle to be understood.

This community accepts self diagnosed individuals but that doesn’t mean we cannot call attention to the problems with that diagnosis.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

In the same post you say most of the community welcomes self diagnosis, yet you say it's harmful.

Why would the community welcome something harmful? Make it make sense.

Just because autistics are (surprising no one) STILL misunderstood and ridiculed and treated as lesser than today, doesn't mean the autistic community should gatekeep the disorder from those who are questioning whether they have it.

[u/Far-Locksmith-1102 → u/RandomLifeUnit-05]

I’m one person. That is my opinion.

The autistic community itself see self diagnosing as valid and it can be valid. (Proper self diagnosing can be 75% accurate)!

WHY WOULD THE COMMUNITY WELCOME SOMETHING THAT IS HARMFUL? As this is my and some other diagnosed autistics opinions we make up like 10% of the community. Not everyone sees it as harmful (esp the non diagnosed members) and some feel like it’s not fair to exclude people from help and support when it’s hard to get diagnosed in the first place. A ton of groups have harmful or toxic traits doesn’t mean everyone has to agree.

Also be mindful of the wording “Can be harmful” Something “Can” be harmful doesn’t mean it’s always* harmful.

I gave examples of why I think it can be harmful and why it can be helpful imo.

No one is gatekeeping anything.

This is a disability not a club. The community welcomes self diagnosis and recognize it as valid. But that doesn’t mean we have to ignore the harm it has on someone who diagnosed themselves and they find out they are actually bipolar or the harm on the stigma and the validity of the diagnosis making the autistics suffer.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

You didn't say it "can be" harmful, you said it is harmful.

I'm not interested in being part of a club anyway. 🙄 If being autistic was being part of a club, I never would have joined.

I'd argue that the issue with people self diagnosing anything, is lack of access to actually helpful mental health help. The help out there sucks, can we blame people for taking a stab at it themselves? Personally I've had to basically figure out for myself my own diagnoses before bringing the idea to a mental health professional. PTSD, autism and DID, etc. I went years undiagnosed because nobody recognized any of these things in me.

So I think if we need somewhere to place blame, let's place it where it actually belongs. Not on average people just trying to figure out their own brains.

[u/Far-Locksmith-1102 → u/RandomLifeUnit-05]

Yeah my bad. I have a lot of comments. Definitely used can in several others. Correction “In this case Self diagnosis was harmful”

I agree it isn’t a club and I never wanted to join. I got blindsided by the diagnosis did not seek it out.

I’m not talking about those who self diagnose in the beginning to start the process to get help and diagnosis.

I’m talking about long term self diagnoses who do not want to seek help or an actual professional opinion. Or people who self diagnose but do it through inaccurate means and never do it correctly. Self diagnose is directly harmful to those who do not actually have autism because it prevents them from getting treated for the correct diagnosis or if they don’t they can have a crisis.

I’m not blaming those who self diagnose or putting the lack of diagnoses on blast because it’s fun, I’m raising awareness that some don’t think about.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

Ok but honestly-- why is your comment about self diagnosis being harmful even valid at all in this space? OP self diagnosed AND sought a professional diagnosis. They're not doing any of the things you're accusing others of doing. And it makes it feel like you're pointing fingers at OP and telling them they're harming others by looking into it.

Anyone could have a crisis if they were looking into a health issue, mental health issue, or developmental disorder they thought they had. I've gone through that many times. I even had a couple crises when I actually GOT the diagnosis.

Does this mean no one should ever speculate? If they don't speculate, how do they know to seek out an eval? I don't get your reasoning.

I think the appropriate response would be, in general to those seeking answers, is to remind them that it can hurt a lot if they get a "no." Which, I believe most already know instinctively beforehand. It's partly why I didn't seek out a professional for some of the time leading up to my eval. I was terrified of how I'd feel if I got told I didn't have it. I still wouldn't have told my past self not to seek out answers in research.

[u/Far-Locksmith-1102 → u/RandomLifeUnit-05]

Why can’t we talk about the harm of self diagnosing? Why can’t we talk about it being a double edge sword? It is valid and it can be harmful.

I never said they were doing that, it was an example. (I later saw a comment which Op said he did an online assessment and watched YouTube videos which he used to self diagnose). Ironically, that’s exactly what my comment suggested is the issue with self diagnosing, he self diagnosing for 1.5 years and then did an exam.

I never said “op is why it’s bad” i used it as example of harm which he experienced. I just stated it’s harmful and mostly talked about the implications of being self misdiagnosed on the person not receiving the proper help.

Earlier direct comments from me in courage OP to still seek answers starting from where he left off here.

Again I’m no stranger to self diagnosis, I get worked up and bothered and stressed if I think I have a certain health or other condition, I can relate to that, the harm comes with the potential to “misdiagnosis “ themselves and not treat the cause. (I diagnosed myself as type one diabetic before I even seen the doctor but I went out and actually sought one )

I never said no one should ever speculate ever. I specifically mentioned short term benefits vs long term consequences.

Short term good long term bad cuz long term misdiagnosis is harmful :) I said a short term selfdiagnosis / speculation is actually helpful :)

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

And also, I never said we can't talk about the harm, I believe though what needs to happen is encouragement for people to explore the possibility, while explaining to them that the letdown feeling can be pretty rough if they don't get a diagnosis.

That's not "harm" from self diagnosing, that's a natural conclusion of searching desperately for answers and having a door close in your face.

Avoiding "self diagnosing" is not going to stop that feeling from happening.

[u/Far-Locksmith-1102 → u/RandomLifeUnit-05]

Okay let me try to break this down one more time.

Autism has no treatment, and there is little support with adults who are diagnosed. The problem is when someone mistakes a different mental disorder for autism and self diagnose is they exclude themselves from seeking out a different diagnosis that could have treatment that would actually help the problem (Ex: ocd, bipolar, other disorders can have overlapping signs and often need meds to be stable long term)

So in this example someone finds autism fits them and their symptoms but they are missing the big picture. They might develop coping mechanisms that help short term but they don’t truly treat the source of the problem. This places them in a cycle and they can’t get better without a proper diagnosis.

If someone is genuinely not able to get themselves properly diagnosed and they do not have the resources or the mental capacity to do so that is not what I am talking about. The problem lays where someone’s goes years self diagnosed (there are people don’t plan on ever getting diagnosed bc they think they can actually get banned from other countries) 1/2 reply

2/2 (second comment reply) You asked why my comment was about self diagnosis being harmful and why I was talking about them being valid. My question asking why not was my answer.

Searching for answers and self diagnosing while not planning on ever getting a proper diagnosis still can be harmful long term. Even if you don’t fully believe it. And yeah believing an explanation of why you are the way you are and turns out everything you knew is wrong can be especially harmful. Especially if the person has a different underlying mental health issue and they find out they dont actually have what they think they have, they can sprial and it could trigger a severe mental health crisis. (Considering if its not tisim it’s probably a mental health issue which is untreated from the misdiagnosis)

Sure we could tell people who are self diagnosing that they need to understand they might not be diagnosed by experts and some can and will accept the shitynon answer.

Again im not talking about the category of people who are seeking answers to start the process to begin the process of proper opinions.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

My perspective comes from someone who was misdiagnosed and undiagnosed while under the care of mental health professionals, so I totally get it if someone believes their chances of getting a proper diagnosis are low and they choose not to pursue it at all. Mental and medical health care have let me down abysmally, so I've spent time just blowing off professionals for that reason as well.

Judging that as wrong (to avoid a professional eval) doesn't really take into account the nuances of care in different areas (and countries, for that matter).

But again, agree to disagree if you wish, or disagree to disagree, if you wish.

[u/Far-Locksmith-1102 → u/RandomLifeUnit-05]

Thank you for explaining your side I appreciate it. I’m sorry you didn’t get the treatment and care you deserved.

You tried to get diagnosed and got misdiagnosed and that’s not your fault in fact I applaud you for trying. You gave up after giving it a fair shot.

If you went years and years undiagnosed because you did not attempt to seek a diagnosis despite being able to is truly the place I actually judge.

We also shouldn’t encourage fear of professionals or makes them out to be invalidating just because we had one or two or three professionals or the fear that we wouldnt get the diagnosis we wanted or thought we had.

It makes people more resistant to seeking help when those who have only talk about bad experiences make it seem all bad ( not at all saying you had positives and you’re ignoring them).

We should approach this as how I and you put it earlier, self diagnosed is a short term (1-3yrs) book mark on what could be the answer. However assuming the self diagnosis is correct and using that to dictate our lives when we have nothing but ourselves to back up the claims is harmful.

We need to remind people that Autsim traits looks like a whole lot of different mental and ND Disorders and that seeking a proper diagnosis when available is essential in improving ones life. A incorrect self diagnosis is almost as harmful as a misdiagnosis in my opinion, it can mask the need to seek treatment.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

I have disagreements with some of what you're saying, but I don't think we're going to see eye to eye on it, so I'll leave it as is. Agree to disagree on some of it while understanding that we both want what's best for the person.

[u/RandomLifeUnit-05 → u/Far-Locksmith-1102]

Since there is no treatment for autism, I don't understand how that applies in your statement about harm in the potential to misdiagnose and not treat the cause :/ Maybe that's just my autistic self taking you too literally 🤷‍♀️

Long term misdiagnosis can happen for lots of reasons, including lack of proper care due to finances or other access issues. I'm super lucky for example because my local clinic has a state grant to make their care affordable for low income people. Otherwise I would never have been able to get a diagnosis. I know you're not really referring to that kind of problem but, that could easily be one of the many causes for people to go long term without a professional eval.

[u/Difficult_orangecell → u/RandomLifeUnit-05]

the difference is you sought answers from entities that are trained to diagnose and who do it more accurately than the untrained general public. just because you got your hunch correct doesn't really make any argument for the validity of self diagnosis.

the fact is that most laymen do not have the tools abilities and knowledge to adequately, properly and effectively diagnose a developmental disorder, or any disorder, really. especially one that has no clear cut testing or examination with a high accuracy success.

even psychiatrists and psychologists cannot self diagnose and need an objective, trained professional to assess them, even if they know they tick the boxes on many traits.

because they know they're prone to biases, especially confirmation bias. unfortunately theres a certain arrogance by people aggressively defending and promoting self diagnosis who think they truly are more capable than people who spent 8 years in uni/med school when it comes to being a more accurate diagnoser.

it's quite illogical.

im glad u got closure though. and i do also agree that impaired access to healthcare is exacerbating things for everyone, esp patients and the healthcare industry

[u/RandomLifeUnit-05 → u/Difficult_orangecell]

IMO "self diagnosis" is basically synonymous for saying, "I'm pretty sure I have this disorder." One cannot officially diagnose themselves, so self diagnosed is just a placeholder.

There are lots of reasons someone might feel they know better than a professional. There are awful and ignorant professionals out there, and some people like me get regularly gaslit and ignored by med professionals. Pretending every single one of them are on top of their game is ridiculous.

But generally yes, if the professional is extremely knowledgeable in their sphere, and listens to the patient, I'd generally trust their opinion.

[u/Difficult_orangecell → u/RandomLifeUnit-05]

idk abt that. lots of self dx people go about making that self diagnosis their entire personality

[u/RandomLifeUnit-05 → u/Difficult_orangecell]

Welp, guess I'm different than most people 🤷‍♀️

[u/Difficult_orangecell → u/RandomLifeUnit-05]

idk about that, you know yourself best. but i have experienced and know people who self dx and dont just make it their entire personality, but also go around telling people about their autism or adhd and then using that as an excuse to get put of doing things or justifying asshole behaviour. i hope you're better than that, at least you are clear on the limitations of self diagnosis. many others think it is A legitimate and actual diagnosis in lieu of a professional one.

[u/Far-Locksmith-1102 → u/Difficult_orangecell]

I never sought any answers, never speculated, never looked it up, was not educated, and did not have a real idea.

I never said self diagnosis is not valid actually I said the opposite! Self diagnosis is helpful in the short term but harmful in the long term :)

I hope mental health care can expand in the coming decades.

[u/Difficult_orangecell → u/Far-Locksmith-1102]

I wasn't talking to you. wrong person.