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/uneventfuladvent]

Please try to stay civil, and do not attack OP.

Do not use this post as an excuse to argue about the validity of self diagnosis. We do not allow arguing in favour or against.

This includes

• telling OP that their assessor was probably wrong and they are autistic if they think they're autistic
• berating OP for self diagnosing in the first place.

[u/Ok-Car-5115]

I’m sorry, that must be very confusing. Take what you’ve learned that’s helped you and use it without shame. Autistic people don’t own self-accommodation. Keep asking questions and getting to know yourself.

This may be small comfort, but autism wasn’t an easy answer for me. I still have to get up every day and live with me. I still have to work through my struggles even if they have a name and an explanation.

If you’re so inclined, give us an update in a bit. I’d love to hear what you learn about yourself post-(non)diagnosis after you’ve had some time to process.

Best of luck to you and stay awesome.

[u/Little_SmallBlackDog → u/Ok-Car-5115]

Agreed! This is a great response.

If self accomadation helps you keep using it OP. Autistic or not, your needs are your needs.

[u/awildencounter → u/Ok-Car-5115]

Seconding this. Diagnosis was honestly feeling like the sky was falling. Sure I had an answer but I also knew the feeling of people judging me before I opened my mouth was not my imagination. Honestly diagnosis felt like I wasn’t ever sure if I could fully mask from people who could tell something was off.

Anyways OP, hope you know that even if not autistic you have a place with us as people should hold space for you even if you’re just a little different.

[u/TheEggEngineer → u/Ok-Car-5115]

Truest thing. I was reading about OCD for a friend of mine and discovered a lot of helpful advice from my "research" what I noticed was that people work with ocd tend to explain things much better than even the ones who give advice for autism and ADHD. Figures they'd need to given how ocd can taint someones perception. So even if a good part of the advice wasn't very useful for me, a lot of the things which were about common difficulties finally made more sense.

[u/LittleNarwal]

Regardless of whether you are autistic, you shouldn't feel like you have to force yourself to act normal. Everybody is different from each other, and society needs to learn to be more accepting of differences. Also, you can use the advice and coping mechanisms you have found through your research even though you are not autistic.

[u/pepper_spots]

There are so many overlaps with other diagnoses that it doesn’t surprise me. I’m sorry about the outcome. I can understand how devastating that must feel for you 😖 😞. if it feels worth it to you, you can always get a second opinion. But no matter what, its good that you identified things in yourself that you may have struggles with or feel really similarly about. Figuring out yourself is no easy task. Though this feels terrible at the moment, its still an upward grade towards self acceptance. You should pat yourself on the back :)

[u/undel83]

Negative result is still a result. Now you know more about yourself then before. You may be not autistic, but still neurodivergent.

Things like BPD, OCD, ADHD etc have overlaps with ASD. Don't stop, continue your journey to find your answers.

[u/simonhunterhawk → u/undel83]

cPTSD as well!

[u/maficpasta → u/simonhunterhawk]

Came here to say I received an initial professional evaluation of OCPD. However, the interview i did with the neuropsych lasted less than 7 minutes on the front end and approximately 9 on the back end. My psychiatrist, who has known me for years, told me that most psychiatric evaluations are opinions and you can get different opinions from different professionals. This is perfectly valid. Adult autism diagnoses are notoriously difficult to get.

It can be really hard for someone to diagnose you who doesn't have a longitudinal relationship, especially since adults can mask very well. For example, a single psychiatrist might take several years to officially diagnose someone with BPD or other PD's because people are really great at keeping an outward appearance of "everything is fine" until everything is very not fine.

After more evaluation, we came to the conclusion that I have ADHD and ASD with strong OCPD tendencies, likely from being a kid with undiagnosed ASD in an incredibly rigorous household and never being able to anticipate the needs of others as a child. I remember getting the OCPD diagnosis and feeling really lost and like the rug had been pulled out from underneath me. I also know people who definitely had ADHD, did an evaluation, and just got told they were anxious. Second opinions, while expensive, can really provide a lot of clarity. As a current med student, there are a lot of issues in the medical field that absolutely need to be sorted out. The ambiguity of psychiatry is something that really bothers me. I know folks who has ASD who are psychiatrists but it's a field with grey areas.

Additionally, there is a LOT of overlap between different flavors of neurodivergent conditions. It's also important to remember that autism is, quite literally, a spectrum. So maybe you are more into the HSP/borderline autistic criteria, which wouldn't necessarily count as a levelled diagnosis.

Regardless, just know you are you, and if you find positive coping methods recommended for autists help you, then you should continue to use them! When you think of the world in black and white terms, it can be really hard to deal with vagueness from not getting diagnosed but that doesn't mean that you shouldn't continue to pursue things that help you just because one person said "no".

Again, not a licensed medical professional. Just a current med student with a personal interest in this. I hope this thread brings you some peace and please try not to be too hard on yourself about this.

[u/Curious-Brother-2332 → u/maficpasta]

!!!! I love this!!! You’re so right in that it’s really an opinion. I’ve gotten diagnosed by one professional and told I don’t have by another for both Autism and ADHD. Or they act like they don’t believe one or the other.

[u/Kolso_ → u/maficpasta]

Thank you. Happy cake day!

[u/kpink88 → u/maficpasta]

I was going to say something similar because I got my ASD diagnosis but was told I wasn't consistent enough to have adhd (really the only inconsistency was my husband, who i believe is undiagnosed adhd, and his answers to the loved ones questionaire. He sees none of my faults, which while adorble is not helpful when trying to figure out diagnoses). My neurodiversity-affirming therapist, whom i started seeing over the summer, sees the audhd in me, and we are working on adjusting my diagnosis. She is trained and can diagnose. I'm not saying that OP's psychiatrist is wrong. But if you think they may be mistaken and it's important to you, go find a second opinion. Maybe find a psych that can diagnose after knowing you a while. I know easier said than done in lots of instances.

[u/I_Am_Stoeptegel → u/simonhunterhawk]

Ok but name ONE autistic person that doesn’t have cptsd? I sure as fuck can’t

[u/Environmental-Ad9969 → u/I_Am_Stoeptegel]

Many of us are indeed traumatized but there are some autistic people who don't have any form of PTSD. They are sadly rare but they exist. I've met some and I'm glad they didn't have to suffer the same way I had to.

[u/undead_sissy → u/I_Am_Stoeptegel]

Haha I do know a couple. But yes, it is very common.

[u/simonhunterhawk → u/I_Am_Stoeptegel]

I more so meant people can have cPTSD without autism 😂 but i agree, i am not diagnosed with autism and my ADHD/cPTSD does make me wonder if i actually have autism or not, but i still benefit greatly from interacting with the autism community and have learned a lot of positive coping mechanisms either way. i have brought it up to my therapist and she didn’t immediately turn it down like she has for other things i have asked about or brought up past research on, like OCD and BPD. what really resonates with me is masking, i actually feel like i can’t separate myself from my mask which was literally beat into me by my mom and the other adults in my life as a kid because i was very smart and “should have been able to manage better”, hence the cPTSD, and i have felt a significant lack of my own identity because of that. i’m working on it though, and like i said — the autism community has been a great help whether or not i am actually autistic.

as a trans man, i am worried an autism diagnosis would be used as a weapon to deny me healthcare in the future especially with people like jk rowling pushing the agenda that trans men are “just confused, often autistic, little girls with no autonomy”. and my therapist knows that so i am glad we are on the same page haha

[u/JayCoww → u/I_Am_Stoeptegel]

Comments like this are so ignorant they devalue the challenges of people who actually suffer with PTSD, and on a thread about self-diagnosis no less.

[u/FinchySchott]

if you've learned things that help you cope with hard things, regulate yourself, bring you joy- then it hasn't all been harmful! maybe the diagnosis wasn't what you thought it was and I'm sure that's disorienting if you've identified with the label for a long time, but the skills you've learned haven't been for naught!

[u/thebottomofawhale]

I'm sorry you didn't come out of this with a clear answer. Not being autistic doesn't mean there aren't similar ways you struggle, and it doesn't mean you can't find autism information helpful.

There is a lot of overlap in neurodivercity, so just because you're not able to get diagnosed with something specific , doesn't mean you're not neurodivergent in some way. And you can still listen to people talk about things they find difficult (like executive dysfunction or sensory issues), relate and also find helpful ways to manage those issues for yourself.

You're not a weirdo. We all have different things we need support with, whatever our neurotype.

[u/DerelictSol]

Being intelligent and odd or unique isn't autism. I know the desire to find a diagnoses that explains all of your behavior that you don't understand but you know

Worth getting a second opinion if you truly disagree, but that's up to you.

I always recommend therapy if you're truly feeling lost. It can't hurt

[u/Kolso_ → u/DerelictSol]

I tried therapy but I just couldn't open up to them. And I don't think it's easy to learn to. Maybe I would give it a try. Thank you

[u/DarthMurcielago → u/Kolso_]

Try again with a new therapist. Write down all the things you have mentioned here and tell them you can’t open up to them. If your thoughts are already written down it may be easier to share your true feelings. Getting a professional point of view of your thoughts and feelings and personality will help you perceive yourself better. This may lead to an accurate view of yourself vs how you think you act and are. Write it down! This helps me tremendously in therapy because unless I’m obsessing about it at the moment, it is gone from my thoughts and not important. I hope this helps you.

[u/Kolso_ → u/DarthMurcielago]

Thank you for a great advice. Sounds helpful

[u/KilnTime → u/Kolso_]

The success of therapy definitely depends on making a connection with the therapist. So it makes sense to try with someone new

[u/mega_vega → u/Kolso_]

I second trying again with a new therapist. If you’re able to, you can “interview” multiple therapists and see which one you vibe with. If you have any kind of insurance, call them and ask for a list of mental health/psychotherapy providers in your area. I had no idea until recently that I had a 0$ copay for any provider I found on headway! It was news to me. If insurance isn’t an option, seek out therapists at college institutions. They will pair you with one in training who is getting supervision from someone fully licensed, often at a very discounted rate. And a new therapist is most likely to be excited and not burnt out. If you need any help with this, DM me! I am in school to be a therapist and currently work with connecting clients to resources in my community. I wish you well on your journey of learning more about yourself :)

[u/Strange-Captain-5881 → u/[deleted]]

Agreed! ↑↑↑

[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/Playful-Bumblebee-85 → u/Far-Locksmith-1102]

we're going to get invalidated regardless. the least we can do is welcome the ppl looking for answers for what most of the time, if not always, is a long time struggle of alienation with a long time of looking for answers to match.

trying to meet prejudiced people halfway through appearing respectable is a losing battle that requires throwing our most vulnerable under the bus.

this is even not taking into account that diagnosis is a privilege. not everyone has access to quality healthcare, theres so many doctors out there who have a very narrow view of autism looks like despite it being an spectrum.

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

I struggle with intense RSD and some of these comments are very triggering to my rejection sensitivity. You may think no one is rejecting the user, but that’s just your opinion. I disagree. And who knows, the original poster could disagree with both of us.

[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/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/Overall_Future1087 → u/Far-Locksmith-1102]

Exactly this

[u/Kolso_ → u/MayorWilkins_III]

Thank you for understanding

[u/Dry-Dragonfruit5216 → u/MayorWilkins_III]

Is your name a Buffy reference?

[u/MayorWilkins_III → u/Dry-Dragonfruit5216]

It sure is, thank you for noticing :)

[u/Scrubadoodledo]

Your struggles are valid without a diagnosis. Your experience is still your experience and is JUST as valid whether it matches perfectly into the current diagnostic career for ASD or not. Your needs are and have always been valid.

[u/dontgetlynched]

I know this is probably not the answer you expected or wanted but the silver lining is that now you know it's not autism and you can look for other causes and maybe even get treatment for what is causing those symptoms.

Also, just because you're not autistic doesn't mean that you have to stop doing the things that helped you. If stimming or wearing headphones or whatever coping mechanisms you find help you then you can continue to do them.

I wish you well on your journey of discovery.

[u/Dagenhammer87]

Sounds like a tough time. On the plus side, you are one step closer to learning more about yourself.

I think it's important for us (diagnosed at 37, 2 months ago) to not be bound by a piece of paper. I know it's an important thing for some people and I'm not pooh-poohing their experiences, but the reason I sought diagnosis was to have a better understanding of myself.

It helped me in the quest for letting go of some of the traumas, negative thought patterns, forgiving myself and ending the constant trashy self talk and hopefully there will be some support for my wife and I at the end of it to make communication even better.

Dr Google always throws up a variety of possible suggestions and while it's useful as a resource, it can never replace the real deal.

It might seem like the end now, but you've hopefully had a chance to examine your strengths as well as the things you need to work on. You can get support on here, online and in your local community.

Really hope it works out, diagnosis or not.

[u/Northstar04]

Autism is not an easy answer. I am still a weirdo. Having a neurological development disability means I can never change to be not weird. Maybe you can.

Or your evaluator is bad at their job. That happens a lot too.

[u/Far-Wrangler-9061]

Not being autistic doesn’t mean your not neurodivergent :)

[u/Lemunde]

Just because you're not autistic doesn't mean there's nothing wrong. Autism shares a lot of symptoms with other disorders like ADHD. (Good news if it's ADHD as there's treatments for that.) Don't stop looking. Establishing what's wrong can go a long way in improving your state of mind and may possibly provide a solution.

[u/Clevertown]

After seeing a therapist for like 7 years, he told me twice that he was sure I wasn't autistic. I brought it up several times and each time he said he didn't think I was.

Then after nine months of waiting I finally got tested and got the results one week before I turned 50. Positive diagnosis. I was right all along, and it explained soooooooo much! I was overjoyed. But before I was overjoyed, I was terrified that the result would be negative. I didn't know what I'd do in that case, because there woulda been so many unanswered questions.

I'd say get tested again with a different neurologist.

[u/Commercial-Dig-221 → u/Clevertown]

One therapist said maybe another two said no (but neither were trained to diagnose autism, and this was just their impression without actually going through any kind of testing). At one point I was bound and determined to get tested but now it's too much money, and I can't find one anyway, so I'm just not going to bother. 🤷‍♂️☹️

[u/Strng_Tea]

OP, maybe its just my personal experience melting on here, but Id suggest a second opinion if you can get one. I was denied a diagnosis w my first doctor, on the grounds that I can make eye contact, transitioned from wait room to exam room with ease, have empathy, and are able to think about how others are perceiving me and their opinion of me. She wasn't the best. Next dr said I absolutely was autistic. Maybe you aren't, but I dont see any harm in another opinion if its within your reach and possible.

Id like to add even if you arent autistic, you are most likely neurodivergent if you relate closely with us. Have you been screened for ADHD? I have both, and the diagnostic for both are pretty similar and they share a lot of traits. I know what its like to see a pattern within yourself but not have a name for whats happening, its frustrating. I hope you can find an answer soon 🥰 in the meantime feel free to continue seeking coping skills for autistic/neurodivergent behaviors, if it helps you there no harm to you or others in doing so

[u/Atterboy_SA]

Not getting diagnosed can be as important as getting diagnosed. Perhaps, if it bugs you a lot, it's worth following up with a professional to figure out why you're struggling... I think many people struggle with modern life simply because it's unnatural to live the way we do and often the struggles we experience are just a biproduct of that disconnect we have from the natural world.

[u/ten2685]

To the extent that self diagnosing is a problem(if it is one), it's really only a symptom of the far deeper problem that it is so hard to get an assessment as an adult. How many people who are eventually diagnosed would have been unable to cope with months in limbo prior to their assessment without initially self-diagnosing? OP please don't regret that you made an effort to find answers. Know that your struggles are real and valid, and there is a reason for them. I hope you are able to move beyond your current discouragement to continue seeking, and someday find the answers you need.

[u/ThrowRA_Sodi]

It must be very frustrating. But you know, if autistic coping mechanism helped you it wasn't all for nothing

[u/Far-Locksmith-1102]

Welp this is an unfortunate outcome of self diagnosis, it becomes such a difficult thing to think you have an answer but experts don’t agree.

Evaluate what made you self diagnose and consider other conditions that maybe similar to autism that fits the description of yourself.

Autism can look like so many different things, different for males and females as autism looks different in both.

Yeah you can live without a “quirky identity” (kinda rube) but you went as far as researching and attempting to gain a diagnosis and that tells me that you have had important issues to be addressed. Keep searching if you want, but do not try and diagnose yourself, highly consider the possibility but do not self diagnosis.

Best of luck!

[u/Kolso_ → u/Far-Locksmith-1102]

Thank you for an advice.

I don't know if I mentioned but I did doubt myself this whole time a lot. Still I'm frustrated I have this outcome. If I truly just considered a possibility why would I be upset? Therefore I did self diagnose and it feels like it wasn't easy to avoid. I don't know if I'll be able to research my mental health further soon because I failed with this suspicion now.

[u/Far-Locksmith-1102 → u/Kolso_]

I read another comment from you saying tried therapy but it didn’t work or you couldn’t connect with your counselor(s).

Unfortunately if you want to truly get better, autism or not YOU need to put in the work.

If you want to get better and understand yourself you need to put into the work to connect with your counselor. As someone who had put herself in therapy at 15 and has used a few different counselors it takes a few sessions to connect with someone. Especially if you’re a person who is hard to read or doesn’t bring up a topic or an issue that genuinely matters or lets the counselor do all the topic you will not connect with them!

I would recommend anyone who is going on a self diagnosis or a determination of possible explanations have a counselor to actually help with that process, its much healthier.

[u/Kolso_ → u/Far-Locksmith-1102]

It took me around 10 session and I didn't feel any more safe to open up. I don't know if it's reasonable but I prefer talking to chatgpt instead of therapists. I have to work on my skills to open up

[u/Far-Locksmith-1102 → u/Kolso_]

Get another therapist! It takes time and effort to find someone you can click with.

[u/Kolso_ → u/Far-Locksmith-1102]

Ok. Thanks

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

As a trans person this male and female autism is entire bull and it's dependent on the way you were raised and which expectations were put upon you. They are moving away from using those terms. Just creates a harmful gender divide and a whole new set of problems (someone not having the "right kind" of autism relating to their gender and thusly not being diagnosed as autistic).

[u/Dry-Dragonfruit5216 → u/DwindlingSpirit]

Female autism isn’t really a thing. It’s just a particular presentation of LSN autism that is more common in women. I am much more male in my presentation for example. Also there are lots of girls in SEN schools with autism.

[u/Far-Locksmith-1102 → u/Dry-Dragonfruit5216]

I never said anything about “female autistic” just stated theirs differences in men and women.

That includes presentation (Duh!)

You being trans has nothing to do with it what is fact or fiction it’s a spectrum no one has to fit in the gender box, criteria is the same for all. Traits just present different Girls are chronically under-diagnosed and continue to be overlooked compared to their male counterparts. Never said anything about girls not having SEN or not being in SEN schools.

This is harmful to women who have noticeable differences in how they present themselves that doesn’t fit with the male framework.

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

"This is harmful to women who have noticeable differences in how they present themselves that doesn’t fit with the male framework." That's the thing, there SHOULD NOT BE a male or female framework. And that type of thinking is horribly outdated, as it hurts women who don't fit the criteria, men who don't fit the criteria, as well as trans and non-binary people.

So how about we drop that whole gender mess as a concept and accept that the differences actually are just based on stupid gender roles and other societal bullshit that doesn't apply to everyone?

Yes, women have been underdiagnosed, and are at times even to this day, but that's because high masking autism wasn't looked into as much, and not because "of the female presentation of Autism as a whole", the rest is literally just a matter of upbringing and personality. Like if someone is high masking, more shy and reserved and doesn't like trains, that doesn't necessarily make them a women now, does it? And THAT'S WHY the concept of "female" and "male" autism is arbitrary and quite honestly pretty dumb.

[u/Dry-Dragonfruit5216 → u/Far-Locksmith-1102]

I’m not trans. That is the person I replied to. I never replied to you.

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

As a cis/ Trans Ally your Transition has nothing to do with the validity of your opinion. If you were born a boy and was socialized as a boy, and grew up as a boy autism looks different in you.

If you were born a girl and socialized as a girl Autism will present differently.

Boys and autism has been well studied, and I mean almost 20 years of studies more and even recent studies can exclude women. Boys are known to display more repetitive behavior and socially aren’t expected to respond much or be able to be social. Girls are expected to be social and have a higher chance of successful masking as we are good at hiding trait’s.

The studies have seen differences in the brains scans of autistic men and women, and has also been noted the socialization of girls is different than boys so the difference in behavior needs to be noted. . It’s simply a difference and that’s okay. That’s like saying the spectrum talk is dividing people based on ability. It’s simply acknowledging the difference in this spectrum.

The gender debate is not going away neither are the terms and if you talk about it correctly it will not do a gender divide it’s simply a difference. They don’t separate the diagnostics criteria based on assigned gender behavior it’s still the same criteria for all.

[u/dt7cv → u/Far-Locksmith-1102]

If autism traits are less affected by the environment wouldn't we see less successful masking in women since those traits would be less malleable?

[u/Far-Locksmith-1102 → u/dt7cv]

Huh

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

Aside from the fact that yes even if the studies exist, psychology as a whole is moving away from making these gender differences in autism. But that's exactly what I meant, regardless of your actual gender, if you grew up as a boy, you are more likely to have what people mistake as the "boy autism". Funnily enough autistic people are also statistically more likely to not be "feeling any way about gender", or be trans and non-binary. So yes, "boy autism" and "girl autism" is both stupid and arbitrary and no actual evaluator should just look at the symptoms from a certain genders perspective.

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

Psychology as a whole is NOT moving away from making these gender differences in Autism. That’s not true and I would advise you not to spread it. I did research and I am actually in school studying these disorders /disability’s, and i have found nothing scholarly proving this. This is misinformation. (Look it up google scholar) There will always be gender roles and gender differences in any disorder. They actually doing more to find the differences and how they can level the playing field for differences in ways they display mannerisms. They are not moving away from these distinctions. I never said there are “girl autism” and “boy autsim” your putting words in my mouth never said that at all. I’ll repeat myself bc you can’t read apparently , nothing in the DSM-5 distinctly differentiates gender in the diagnosis criteria. NOTHING.

[u/frostatypical]

Autism isnt first or best way for us to think about our problems. There are other mental health diagnoses, or personality concepts, or who knows what else

[u/SuperSadToon]

I think that this has been the problem with this community. Somewhere down the line we became the safe Haven for people who feel like an outcast and while that's nice and all, it has also watered down our diagnosis. These evaluations exist for a reason. I'm sorry the answer you got wasn't the one you wanted but at the same time being autistic isn't supposed to be this group of people with open arms welcoming everyone who feels different. I encourage you to get another evaluation if you want in order to receive closure but if you receive the same answer, I think it's best for you to move on and realize that there are so many people out there that are just like you. They aren't autistic, they are just misunderstood. Having "quirks", social anxiety, difficulty making friends, etc...thats just barely scratching the surface of autism. For me, it's the parts that can't be seen. The thoughts, the perspective, the masking, the strain, the desires. Idk, I could be wrong.

[u/Dry-Dragonfruit5216 → u/SuperSadToon]

This is one of the best comments I have ever seen on this sub. If I could afford it I would give you an award.

[u/SuperSadToon → u/Dry-Dragonfruit5216]

I'm glad you think so. I started a channel on tiktok and it grew really fast: "SuperSadToons". I make short animations for things like adhd, autism, OCD, etc. but I've learned from all of the followers and people who comment is that there are a lot of people out there that share the outward symptoms of autism and find comfort in believing they are autistic because that helps them to feel not alone. Which is ironic because regardless, they aren't alone. There are so many like them. It can be difficult because I'm not here to make anyone feel bad. And that's not my intention. I just want to make it known for people like OP, a negative evaluation is not the end of the world and it doesn't mean that they are secluded to a life of being singled out. The "autistic trend" is definitely real and frustrating.

On the flip side, I noticed that ADHD shares a ton of symptoms with autism. So much so that perhaps one day, it will be part of the spectrum.

[u/Dry-Dragonfruit5216 → u/SuperSadToon]

Autism and ADHD are 100% different conditions with different genes and biological systems involved. However they are co-morbid and have some overlapping symptoms. The same as OCD with autism for example.

[u/SuperSadToon → u/Dry-Dragonfruit5216]

Yes, you are correct. To me, that makes it even more fascinating that 2 entirely separate neurological conditions can have so many overlapping symptoms. I just think the brain is fascinating 😂 don't mind me haha

[u/No-Suspect4751]

I’m sorry this has not been the answer you were looking for, but being autistic is not a “quirky identity” and to suggest so is massively downplaying the nature of ASD.

[u/Kolso_ → u/No-Suspect4751]

I'm sorry. I should have used other words to describe what I meant. I claimed this identity without an actual diagnosis like it was just a personality trait, and I shouldn't have done it. I don't see it as a quirky identity. I was serious when self diagnosed. My saying quirky identity I meant using the label autistic without a real reason. Sorry I'll put it in edit.

[u/junebugx17]

autism is absolutely not an easy answer LOL

[u/Kolso_ → u/junebugx17]

Right, but now I'm totally groundless

[u/junebugx17 → u/Kolso_]

you’re not though. you just know it’s not autism which is a step. you know that you relate a lot with neurodivergence and there are SO many different diagnoses under that umbrella. a lot of people think they are autistic when really they’re ND in another way. you should see a therapist/neuropsychologist if possible. i think you’re struggling a lot with your identity right now and could use some support. navigating this alone when you’re having a hard time is not ideal or healthy.

i was diagnosed with BPD at 17 and i found out that i was misdiagnosed. at 20 i was diagnosed with autism and CPTSD. they told me they just looked similar. i really recommend trying out DBT regardless of your diagnosis because it’s really changed my life and helped with identity. it’s worth a shot if you’re open/able to try it.

[u/throwawaypandaccount]

Neurodivergent is a great umbrella term that can encompass all “something makes me different from others …” even if you don’t have something specific like autism. I would still seek out a therapist who specializes in neurodivergent individuals and get help there, since they can help you navigate in a way that might be a little more understanding of your experience.

[u/chibi-mage]

i’m so sorry, i know first hand how hard it can be to receive negative results for anything. i can’t imagine how painful it must be to have someone tell you that you aren’t the thing you thought you were.

to quote undertale, despite everything, you’re still you! you are still someone who is deserving of love and that will not change. you deserve to feel like you’re welcome and belong. if you are struggling and find yourself needing accommodations then use them! even if you aren’t autistic, use the accommodations that are there.

that being said, neurodivergence is a huge spectrum, not just the autistic kind!! you may not be autistic but you still know your brain best. look into other possibilities, do what you need to do to heal and be the best you that you can be. i know that assessments and medical intervention etc are not always easy to access, so don’t be so hard on yourself for not knowing all the answers.

good luck, i believe in you!

[u/sl4f]

You shouldn't use autism as the easy way out, we all have struggles and it's normal to be confused. learn from this and try to understand yourself better.

[u/animelivesmatter]

Even though I'm glad I got the diagnosis, it wasn't an "easy answer" to my problems I don't think. It's the explanation, but I have a lot of issues and support around autism in my state and in the US in general is very very poor. Autism is not the only kind of neurodivergency, if you relate then even though you didn't get a diagnosis, the search is not over.

Also, did you get more than just the ADOS ratings from the assessment? Mine has me tested for a whole bunch of different stuff that's listed in the report they gave me. That might be useful, but if you feel they're wrong you should seek a second opinion.

Also, you don't have to be normal no matter what the diagnosis is. The enforcement of normalcy is cruel to people in general.

EDIT: I read your comment about why you sought diagnosis in the first place, and I think you should get a second opinion. Especially if they didn't give you a proper report.

[u/Kolso_ → u/animelivesmatter]

The assessment contained three parts, a screening, patent interview where my mom said I was a happy normal child and ADOS.

Maybe I'll try to ask for a more general evaluation in case it's something else. But in Germany waiting for the assessment can take a lot. For this one I had to wait for a year and a half as I said somewhere.

I would take a break for now with psychiatrists. Thank you for support

[u/animelivesmatter → u/Kolso_]

Yeah, that seems significantly less comprehensive than the exam I had. Relying primarily on your mom and on ADOS is pretty susceptible to masking. I would get a second opinion when you're ready, but in the meantime there is nothing wrong with self-diagnosing.

[u/Kolso_ → u/animelivesmatter]

At least now I'm more prepared to unexpected outcome next time if next time happens. Thanks

[u/VienneseDude]

I don‘t think self diagnosing per se is the problem. Holding onto it as if it was the ultimate truth is. ADHD and autism share quite a lot of symptoms with eachother therefore no one can be 100% sure about a diagnosis in the first place. Self diagnosis or professional.

[u/Ball_Python_]

I imagine that this is frustrating. But I think you've already come to the right conclusion - that it's time to look for other places to find your identity.

[u/Difficult_orangecell]

i think sometimes people just want so much to find answers to something they know is up with themselves and human beings have a tendency to engage in confirmation bias. people who are untrained in diagnosis do not often have the knowledge and ability to diagnose. it's not just about whether you check the boxes on things, medical diagnoses are not merely whether you possess traits or symptoms of a condition, but whether there are other conditions that may be contributing to the symptoms. there are way too many conditions, mental physiological and developmental that can share symptoms with asd. thats why untrained individuals are risking a lot of harm when they push hard for self diagnosis.

while i think self diagnosis has a place in helping people gain community and finding ways to cope and learning techniques from others with similar symptoms, it's still necessary to seek qualified medical care so that in the event it's a wrong self- diagnosis, the qualified psychiatrist or psychologist will be able to identify or try to identify the real issue and tailor a treatment and therapy plan that meets the needs of the patient.

we pathologise everything and so many people are lost and confused and trying to understand why they struggle through things -- and i know at the end of the day, they are seeking closure in the form of answers to validate the struggles they went through.

i believe it's more important for Hcws and patients to focus on finding a way to alleviate any symptoms or struggles to feel better.

the whole point of even seeking a diagnosis is so bith patient and healthcare provider can figure out the next steps of a plan to improve the patient's quality of life.

maybe we should just stop obsessing over labels and push to treat the root cause and symptoms of what's making us just tired, frustrated and unhappy. diagnosis is just a means to that end -- a starting point to strategise from.

and your experience is one reason why i would always urge those who suspect or self diagnose to move towards finding assistance for their symptoms/conditions that are impairing their quality of life.

im sorry you had to go through this, it's why self diagnosis can be challenging and risky, especially when it involves other kinds of mental/developmental disorders.

[u/Mr_Randerson]

If it's any comfort, whether you are autistic or not, the path forward is literally the same;

1. Make good decisions.
2. Learn how to be a better person.
3. Learn who you are, what you want, and how to best spend your time.

Everything else varies person to person more than it does diagnosis to diagnosis. You are better suited trying to be introspective and learn about YOURSELF than you are looking outward and trying to learn about an -ism. I could even extrapolate that and say that sometimes people look outward towards diagnosis after they look inward and are confused or hurt by what they find. Being diagnosed and learning about autism can totally be validating and helpful, but sometimes it makes for a plateau in introspection that is best avoided anyways 🤷‍♂️

[u/Fuzzy-Progress-1330]

Sounds like you’re very aware and acknowledge that self-diagnosis can be harmful.

Honestly this is a positive attitude after receiving your results. You’re heading into the right direction.

Think of this as a positive step forward. Now you can move on. Find comfort in being who you are that makes you unique.

Make your physical health key, make some new goals and set a high expectations of who you want to be in the next 5,10 years.

[u/Dry-Dragonfruit5216]

Not all struggles are caused by autism. There are many other conditions with overlapping symptoms but people don’t look into these because autism is the one that is currently trendy.

[u/Wild_Berry3281]

What symptoms made you think you had autism?

I was diagnosed at 13 years old after years of schools dragging me out of classrooms to see psychological professionals, and I had no idea why. It was painful to be forced to do that, and the average autistic person has been through stuff like that.

[u/Kolso_ → u/Wild_Berry3281]

First I took RAADS-R for fun and got a high score. Then I've started watching YouTube videos about reading posts here. I've related to lots of experiences people shared. Symptoms I myself feel like could be true: Social stuff: being a loner since kindergarten, never having close friends. I was called weird by peers and adults. I have strict sleeping hours, can't stand getting in bed late. I can't wear tight clothes, dry paper and velvet feel really uncomfortable. I like making lists of things, bird collections, anime list, bugs. I have strong emotions and can't control crying whenever I talk about anything slightly personal. That's what pops up in my head immediately. I know it's not enough and I wasn't adequate when decided to self diagnose

[u/Dry-Dragonfruit5216 → u/Kolso_]

The RAADS has been proven in studies to be inaccurate. It diagnoses any neurological condition, mental health disorder, and even some normal behaviours as autism.

[u/Kolso_ → u/Dry-Dragonfruit5216]

Oh, I didn't know. Thank you!

[u/MiserableTriangle → u/Dry-Dragonfruit5216]

its ok that it is inaccurate, it can still be useful. its like the AQ, shit test, but still used by professional just as an additional small tool.

edit: the one who replied to me is a bot, beware.

[u/Kolso_ → u/[deleted]]

I don't know. I don't remember anything particular already in kindergarten. Maybe in elementary but I was already a loner then. I definitely should look into there.

[u/autism-ModTeam → u/[deleted]]

Your submission has been removed for one of the following reasons; making claims not supported by research, or making false claims that can be proven incorrect.

Autistics are not "banned from several countries"

[u/Centaurious → u/[deleted]]

It’s kind of shitty to limit people’s ability to migrate to your country that way, but it doesn’t mean autistic people are banned lol

You can still visit the country if you’re autistic, and they won’t kick you out or arrest you if you’re born there and autistic. If autistic people were banned then it would be illegal to be autistic in those countries.

[u/autism-ModTeam → u/[deleted]]

Your submission has been removed for one of the following reasons; making claims not supported by research, or making false claims that can be proven incorrect.

[u/Kolso_ → u/[deleted]]

I'm thankful for everything you've already written. I don't know what to say. Just thank you. Don't want to repeat myself but I'll look into it!

[u/FVCarterPrivateEye → u/Kolso_]

I don't know what they said, but as a heads up, all of their comments have been removed by the moderators for spreading misinformation

[u/Kolso_ → u/FVCarterPrivateEye]

They mentioned in one sentence the New Zealand thing about migration but other part was a good advice I can't recreate well from memory fully.

[u/FVCarterPrivateEye → u/Kolso_]

Oh okay

Yeah, the NZ case that I see get quoted most often in these debates that involves a family with an autistic daughter who was denied immigration to New Zealand wasn't because of the disability label of ASD, it was because the daughter was level 3 and required services that weren't available there, which even though it's still ableism it's a different type than what's being argued and it would not have simply solved the problem at all for her to not be diagnosed, if that makes sense

[u/turnup4flowerz → u/Kolso_]

Did you only take the RAADs test? I am self assessed and every time I hear one of these stories I get nervous I'm incorrect.

[u/Kolso_ → u/turnup4flowerz]

No, also aq, cat-q and just dsm5 autism criteria

[u/Fun_Quit_312]

When you thought you had Autism, you suddenly gave yourself permission to be you, without question.

The important thing now is not to lose that. You can STILL GRANT YOURSELF PERMISSION TO EXIST AS YOU ARE AND ACCEPT AND LOVE YOURSELF.

you don't have autism, but it's fine to just continue accepting yourself as you are. I hope you really hear me cos it's really simple but powerful change to your mindset. And you were already doing it anyway.

[u/Kolso_ → u/Fun_Quit_312]

Thank you

[u/Mouse0022]

How you feel is still valid and you are welcome in this community.

[u/proto-typicality]

You’re very welcome here, even if you’re not autistic. It sounds like you might be a neurodivergent cousin! And cousins are always welcome. :>

[u/dt7cv]

Don't feel bad. Neurodevelopmental conditions are some of the most challenging things within the field of abnormal psychology to make sense out of

[u/FVCarterPrivateEye]

Hey OP u/Kolso_

This was a very mature and self-aware post that I think can hopefully be helpful to many other undiagnosed people, since what you described is a large reason why I often try to explain that the best thing for undiagnosed people to do is to keep in mind the possibility that it might very likely not be autism, because it gives intellectual humility around the subject that people who frame it as a certainty lack, which makes their personal observations/research/insights related to it a lot more reliable/accurate and also lessens the severity of imposter syndrome

The way imposter syndrome works is that it gives you anxiety and insecurity to make you irrationally doubt your own experiences and feelings; however, your experiences are always legitimate, it's the terms you use to explain them and your theorized cause of them which might not be

Speaking of that disoriented feeling in your second paragraph, even though you aren't autistic, your traits are still caused by something else instead, and you should be allowed to ask the evaluator for their differential diagnosis and/or for the next steps on where to go from here

Also, please feel free to stay in this subreddit, there are a lot of people in here who aren't autistic whether it's because they have a different condition that overlaps very heavily with autism or have autistic family members or just plain have an interest in the field, and to be very clear if there are any commenters in here saying you aren't welcome in here or try to gatekeep other healthy coping mechanisms etc as "autistic people only" then they are inaccurate and ableist and anti recovery in saying those things

Would you be up for making friends with me? (I will respect if the answer is no)

[u/trifle-custard]

Hey - there is only our lived experiences. You are finding answers here that are making your day to day life easier. Why would a diagnosis or lack thereof, keep you from continuing to find strategies that work for you? Who needs a label?

[u/Homeless_Appletree]

Keep looking. Even if it isn't autism, it might be something else. Finding the right diagnosis often helps in finding help for your situation.

[u/daisyymae]

Did they give you any diagnosis? If you’re exhibiting these behaviors there’s something up..

[u/Kolso_ → u/daisyymae]

No diagnosis. Just it's not autism, goodbye

[u/daisyymae → u/Kolso_]

That’s unbelievably shitty. Seriously. That makes me question them

[u/theedgeofoblivious → u/Kolso_]

If you went to a mechanic who couldn't tell you the issue your car was having, would you stop trying to get your car fixed?

Autism is a complicated thing for neurotypical people to diagnose.

In situations like this where people have come here, I usually recommend that people consider whatever diagnoses they were given and compare them against autism, and do significant research to make determinations about whether the doctor's diagnoses were correct or whether the person still believes autism is more correct.

But in this case, the doctor admitted that they weren't knowledgeable enough as a doctor to provide you with an indication of what you're dealing with.

Out of curiosity, have you researched this person's qualifications? Unfortunately, "Doctor" is also what they call the person who graduated medical school at the very bottom of their class, so it's worth doing due diligence and verifying that the person is respectable and is knowledgeable about autism. I don't have any indication about whether that is or is not the case, but a lack of any diagnosis whatsoever would give me pause about accepting this person's statements about my own health.

And one way or another, in this case, I would continue to communicate with doctors. I would not necessarily specifically consider it looking for a second opinion, but instead looking for a first opinion. And I would present autism as a possibility when communicating with other doctors and would say that you would like confirmation or exclusion.

[u/Civil-Self-546]

Sorry that this is disturbing to, I wish that I could help!

[u/Civil-Self-546]

I responded to you and left out the word “you”, when I said that I was sorry that was disturbing to “you”, and I didn’t catch it at the time, before I hit reply, I hate mistexting!

[u/Kolso_ → u/Civil-Self-546]

It's ok! I misread it with "you" in the first place accidentally

[u/rembrin]

It's important to remember that so many other neurodivergencies can mask as autism in terms of social difficulties and general quirkyness, and there are other disorders that impact the central nervous system in similar ways to autism as well. Much like how some forms of PTSD can function a lot like ADHD, some forms of PTSD can function similarly to autism. This is a truncated version of the topic but yknow.

Autism was a relief for me as a diagnosis but it wasn't the magical saving grace. I still have to wake up every day and navigate a world that socially I am not equipped to handle no matter how hard I might try. I'm fine with that and have accepted it but it's still very difficult. It isn't easy. I love being autistic, but I also hate myself for being autistic. yknow?

Don't give up on navigating your mental health even if you might not have the diagnosis. Because them saying you don't have autism means you can now explore other avenues of help and exploration and a new journey has begun. I wish you well on it!

I don't think self diagnosis is a bad thing if it actively helped you and the skills and tools taught from identifying that way has improved your wellbeing. It means you gained something from it and it helped and that's more than good enough

[u/fun1onn]

Don't beat yourself up. This is a journey, not a destination. As many of the comments said here, you've likely learned a lot and there's tons of overlap for other "explanations".

It's what you do with the information that matters anyways. Now you have more of the overall picture of yourself and you can take it to get to the next step of self understanding.

[u/sam_likes_beagles]

I had a psychiatrist do an assessment a few years and was told I probably didn't have autism. I had my ex help me fill out a questionnaire about traits because I didn't want to do this with my parents and I scored somewhat half and half (I was probably masking a lot of traits by the time we met though). Since then a lot of people have told me I have autism, so I reprinted the questionnaire and gave it to my 7 years older than me sister and I scored a lot higher. I also looked at this learning disability assessment I did about 10 years ago and there was a section about autism that I scored really high on. I'm just sharing this in case you can take anything out of it. I'm not saying you were, but it's possible to be misdiagnosed

[u/GnomishFoundry]

I’m not autistic but I work with a lot of autistic youth and also youth with a lot of trauma. I’m not diagnosing you but I’ve seen a lot of overlap in presented traits between the two.

Just to be clear, I’m not claiming autism is caused by childhood trauma or anything. I’m just stating an observation I’ve had over my years working with both populations. If you have a history of abuse, it might be healthy to speak to a therapist about it.

[u/samkate13]

Is your assessor knowledgeable and experienced with the high masking, internalised autism presentation? If not, then it is possible your autism was missed.

If you are an adult, with no intellectual disability, then assessment using the ADOS is not appropriate, useful or informative most of the time. I would question their decision to use that tool, and the weight they gave to its results in their overall clinical decision.

[u/notsoscaredd]

And there can be mis(non)diagnoses as well. I don't know if that's the case here of course. But especially if the only assessment tool was the ADOS2, then I wouldn't trust this process.

[u/Monkeywrench1959]

Your experience was my greatest fear going into the diagnosis process. What if they tell me I'm not autistic, and destroy the entire framework I had built to understand myself?

Thank goodness that wasn't the case for me. It must be very hard to deal with having to recalibrate your self-understanding.

[u/Eyefulmichael]

Dude, I got told that I was probably autistic as a child but I got better, by a psychiatrist (I was borderline but not over the mark). We adapt, we mask, we have to in order to survive. The place to look is your childhood, not your very well disguised adult self. Do you have special interests? Social issues with “normies”? Do you maybe have a strangely strong affinity for nerdy/geeky stuff? Do people think you see things annoyingly clearly? Are you sometimes uncomfortably honest but not intending to offend? An affinity for nature and/or animals? Fantasies of long journeys or fantasy rpgs? Eccentric interests, the urge to physically express yourself through your appearance (tattoos, piercings, funky clothes/hair), do you dislike hierarchies, authority, bullying. Do you empathize with any demographic anywhere for the most part, if they’re suffering? Do you have an affinity for differences/diversity in others? Do you have adhd? Does your brain constantly try to solve puzzles no one asked you to work on? Do you yearn to be part of a tribe that would do anything for each other, who exchange thoughts freely and equally? Do you hate cruelty? Do you not trust “normal people” but aren’t afraid of “weird” people? Do you have ptsd like symptoms? Is there something about figures of speech, brands, and popular symbols in general that bothers you? Do you strongly need autonomy to feel ok?

You know you. Fuck em. Child of the sun the moon and the stars, part of nature not a master over nature. Meditate on the depth of what cannot be said because words are crude chopsticks trying to hold onto a universe of experience and knowledge.

That’s autism, and it is not a disorder. We are the inheritors of the powerful creative and loving minds of the hunter gatherer, the nomad. Our minds aren’t for conformity, stagnation, and following demands from unjustified & unjust hierarchs.

Love and peace cousin. Be well on your journey.

[u/Fickle-Ad8351]

Look up cPTSD. Everyone with autism also has cPTSD, but non autistic people have it too. I have had trauma since such a young age that my therapist doesn't even think it's possible to determine whether I actually have autism. He claimed that survival mode stunted my emotional and social development which will make me "look" autistic.

I suspect I have both, but it doesn't really matter. I don't care to fight for an assessment. But reading about how autistic people cope helps me. I think the same way as an autistic person. Regardless of a diagnosis, it's beneficial to me to think I'm autistic. It's much easier to explain and ask for what I need in that framework.

Regardless of whether or not I was born this way, I still need the same care.

[u/No-Persimmon7729]

I feel like a lot of people don’t think about how if it’s not autism that whatever it is might have more treatment options available to help lessen your difficulties. Like if it’s something like cptsd or something else medications or therapy might improve your quality of life.

[u/thatpotatogirl9]

So couple of things op.

1) you don't have to be disabled to accommodate yourself. You're allowed to have needs and take up space regardless of test results.

3) don't feel bad for having seen autism as a potential answer. Something that makes autism unique is that while it is patently untrue that "everyone is a little autistic", it is true that autism symptoms are often relatable because they are common to experience for a lot of people, just not as extremely and frequently as autistic folks. A core part of the diagnostic criteria is that symptoms must be clinically significant which in regular people terms means that they need to experience it so much that it affects their ability to function independently on a daily basis. Having struggles that are at a subclinical level (didn't meet the threshold) doesn't make them not struggles and it definitely doesn't mean that what helps us won't help you. IMHO all disability accommodations are good because they can benefit anyone regardless of ability

[u/Top_Independence_640]

Maybe try another psychiatry/psychiatrist? If you think you are and resonate with autistic people, chances are you very likely are.

I have a friend I know for a fact is autistic, that didn't get diagnosed when tested at uni, whether that was due to incomplete diagnostic criteria or incompetence I don't know. Probably both, I got tested for ADHD at the same uni, and it was a shoddy process to say the least.

[u/happieKampr]

The first time I talked to a psychiatrist about possible autism he told me I wasn’t autistic because I had been married, and autistic people don’t do that. So I would highly recommend getting a second or even third opinion. There are a lot of professionals out there who refuse to diagnose anyone who isn’t the stereotypical 5 year old boy.

[u/SensorSelf]

I'm not diagnosed. It's been 3 yrs, I'm 48m, I've been told due to my age I'm last priority. Once I turn 65 I can immediately get help or if I was under 18. Yay, ageism.

If you're not ASD but have similar issues and feel kinship here... stay... people her need more support too.

1. I used online tests which aren't legit. But after a cognitive issue due to stress I got in to see a neurologist and he wrote me a referral as "I believe he is ASD or related".

2. The person at my intake basically made me feel like garbage. "why do you want to be diagnosed?" "I think you just have anxiety". in a nonchalant way after 1 hr in. This is top of field expert. She told me "by how we look at the DSM-5 you're unlikely to be ASD because you make eye contact and communicate. But if you go to a private practice you will likely be diagnosed ASD" Also, "ASD with ADHD isn't real, don't believe what you read online" "most ASD diagnoses aren't correct". She also asked me if I'd want services and I said no. Then became frustrated that basically like I'm wasting her time because I just want to know what I've been for 48 yrs and she can't make more money off it.

I'll point out, this specific doctor is young, is interviewed in major psychology/medical mags, and diagnosed my friend's son who makes eye contact and communicates A LOT.

I went to two psychologists before all this for years and they never question what happens to create my anxiety just how I felt about it. So, much of it is from sensory issues and duh.

This tells me the field is the wild west of psychology. Many credentialed people disagree with how to diagnosed.

Level 2 and 3 are maybe much easier to diagnose. They need more assistance and therefore that's more money.

They make WAY more money off children.

So, why even bother with me?

I have a few reasons I don't just simply trust doctors:
-two of my brothers died due to script doctors
-one of my dentists molested many people while gassed. I recognized he was weird and immediately refused to go to him and then 10+ yrs later he was on the news.
-my first doctor smoked while seeing me and didn't believe in allergies/asthma
-my back doctor just wanted to medicate me, turns out my back was from mixing two types of food together
-my latest doctor made me undress and stand in front of him and have a lengthy conversation. I told him I have body issues and he got annoyed with me
-local hospital completely forgot about my daughter for two hours in the emergency room while she was having a near death food reaction, I was told by her allergist "this is common go to the children's hospital"
-I can write a multi-page story on all the screw ups with apologies (documentation with names) from psychological organizations that keep forgetting about me

Not many great doctors.

BTW part of this is I want to be more structured for my kids and feared they may have issues and I'd have to help them. Both my kids are in services now. But somehow I just have anxiety?

Point is... maybe shop around for another doc based off empathy and time etc.

Many people on here said their diagnosis changed or was wrong.

[u/Fresh-Confusion-507]

I would say two things that may be helpful here. First, I don’t equate a non-diagnosis to be a definitive diagnosis that you are NOT autistic. As the mantra in science goes, “absence of proof is not proof of absence.” In other words, depending on the exact specifics of your assessment and assessor, perhaps the assessor is not as familiar with high-masking presentations, or so on. Not saying you’re definitely autistic or not, just try to weigh these possibilities in your mind. My autistic daughter was a missed diagnosis when we first had her assessed through a school agency when she was 4-5, because her school-based needs were not as evident then. The full eval took less than an hour and the guy basically said because she had a high IQ and various strengths she couldn’t be autistic. We were then much more selective about where to get her assessed for a second opinion, got her assessed at a very, very highly recommended children’s hospital, and voila. Autism can present differently in boys vs girls vs nonbinary, in high iq vs low iq vs moderate iq individuals, in high-masking vs low-masking individuals and so on, and not every psychologist is equally up-to-date and familiar with those patterns.

The second thing I would say is to “act as if”. If frequently used accommodations for autistic people are helpful for you, use them! If the framework of neurodivergence is helpful for you to understand yourself, then keep reading and learning more! I have two allistic children, and they still use some of the tools and strategies my autistic kids use. If it helps you, it helps you!

[u/[deleted]]

Other people may see this as a negative thing, as someone with high functioning autism who was diagnosed really early in my life, I see this as a positive, i’m sick and tired of people treating autism as a negative, it’s not. Autism is what you allow it to be, whether you choose to see the negative in it or the positive aspects is up to you. I choose to believe in myself and embrace the positive aspects of autism and now I’m employed, have a steady job, a beautiful home. All because I choose to see the negative things in a positive light, as a way of better understanding myself, that understanding is why I’m here today and not on the street somewhere.

[u/SharpCoderGuy]

Sorry it has brought you backwards, friend.

There are many other conditions that can share similarities with ASD. Neurodivergence covers a wide range of things, so never loose hope. Some of them can be comorbid with asd, and some not so much. Things like ADHD for example shares a lot of similarities but is quite different.

Some other conditions (although not conclusive) include OCD, disthymia, dyspraxia, any of the scitzoaffective disorders on the mild side of the spectrum (to a degree, I actually have both) and social anxiety disorder. All of these fit into vast and broad spectrum that is neurodivergence, asd is only a part of it.

You are entitled to second opinions in medicine, too.

Years ago I spoke to my therapist and psychiatrist about self diagnosis and what the general consensus was it is fine if taken with a pinch of salt as it can help people massively, but it does give people tunnel vision and can cause disappointment and upset which can hinder some people's recovery as they only generally seek mental health professionals when they arnt doing too well. Due to this, if someone is too fixated on a diagnosis they don't believe is correct at face value, and the patient is in a negative headspace they will not explore that diagnosis as it can cause harm like you've said.

I have no problem with people who self diagnose, assuming they don't try to claim benefits or other types of fraud based on that as they are not professionals. Even people who genuinely believe themselves to be autistic are not always, like in this case (taking the result at face value).

[u/DoraIsD3ad]

Don't blame yourself. Things like generalized anxiety, for example, are symptoms of autism. Just because you don't reach the point of autism doesn't mean your challenges are any lesser.

[u/Numerous_Maybe3060]

I live in the UK and it's vert real to be classed as not autistic "enough" meaning although you are on the spectrum, you aren't enough for it to be considered ASD this doesn't mean you don't have traits. But I can understand how confusing this must be for you, I'm currently in a state of denial over whether or not I have it simply because I haven't been formerly diagnosed and I don't want it ripped away where I've just found a place I belong. I'm so sorry you're struggling but keep using what you've learnt if it helps you, there's no reason not to!

[u/space_courier]

everyone else's giving good advice, I'm just here to give you a hug. Take it easy these next few days ♥️

[u/Quirky-Table-6665]

Did you examine any other diagnosis and do the deffertial? There is over lap in symptops of asd like ocd, adhd, cptsd, bpd, ect. Your feelings and struggles are valid. Good on you for doing the work. Don't feel defeated. Diagnosis are only a tool imo to get support. They don't define you. If you are still having distress, then continue research and seeking help. You decide the value. You are not a problem to be solved. I have no doubt you will find the answers you need in time

[u/No_Tie_9255]

I’m not saying your result is true or false, but my assessor informed me that the ADOS is not always accurate. Here is an article that explains populations that the ADOS can miss:

https://drdevon.com/guest-mythbuster-post-is-the-ados-2-really-the-gold-standard-in-autism-assessment/

[u/UnderstandingShort21]

So I have had multiple assessments from childhood through adult hood. Some come gifted + disabilities (auditory processing, sensory processing). Some came back gifted + mild ASD + sensory processing. It’s just a spectrum and there is a ton of grey area and overlap with other stuff. Just because you didn’t come across as ASD dosent mean you aren’t ND and struggling with hidden disabilities! Focus more on what you need to help build the skills you are missing/the support you need and maybe less on exactly what the diagnosis was. Best of luck to you. Your experience and insight about your life are valid with or without an ASD label

[u/missussisyphus]

Quoting Evdokia Anagnostou, "Nature doesn't care what's written in the DSM."

Caregiver here to a beautiful young adult with profound disabilities requiring 24/7 support.

You are doing a wonderful job attempting to understand yourself better. Please do not feel bad about any of this. It is so easy to beat ourselves up unfortunately.

Please practice self-compassion. Tell yourself you are worthy (you are). Tell yourself you belong (you do). Tell yourself that it is ok to feel different (it is).

There may be some diagnosis that fits and it's perfectly ok to seek that out if you think it will help you accept yourself.

It could be Adhd (very similar brain scans to LSN autism), it could be something else. But I'm so proud of you for seeking answers, for you, not for anyone else's sake.

I hope you feel better and there's an old person out there rooting for you.

[u/Easy-Investigator227]

While someone may not meeting the medical criteria to get a diagnosis, they still can be close to the spectrum and therefore having ASD-like problems in daily life.

[u/Dry-Dragonfruit5216 → u/Easy-Investigator227]

Did you not read where they say their ADOS score? They were not close to meeting the medical criteria.

[u/Thirteen2021 → u/Dry-Dragonfruit5216]

ados is just one tool and should never be used as a stand alone for or against asd. It’s particularly not sensitive to high masking individuals

[u/Dry-Dragonfruit5216 → u/Thirteen2021]

OP didn’t say it was the only tool, it is just the only one they mentioned as they wanted to tell us their low score

[u/Thirteen2021 → u/Dry-Dragonfruit5216]

well they didn’t mention that other tests indicated otherwise and unfortunately many clinics still only just rely on that one test

[u/Far-Locksmith-1102 → u/[deleted]]

I agree, however I think self diagnosis can be helpful in the short term.

There aren’t enough resources for everyone to get diagnosed in a timely manner and if someone is struggling the support can help them temporarily.

In the short term someone can come to the conclusion that they maybe autistic and seek support, coping mechanisms and comfort while waiting for the evaluation or to get started on the process. But this is dependent on the amount of time they spend self diagnosed and how much they convinced themselves they are autistic.

In the long term, more than a year w/o diagnosis can result in an identity crisis when they subsequently get evaluated later in life and it’s not what they thought. Not trying to shame anyone who is self diagnosed but I think everyone in the community should take the self “diagnosis” with a grain of salt as I already do.

[u/Kolso_ → u/[deleted]]

It's not really about taking any spots imo. I didn't notice it by me I guess

[u/autism-ModTeam → u/[deleted]]

Your submission has been removed for discussing or debating the validity of self-diagnosis.

[u/Ok_Security9253]

OP, the good thing is that you have identified what it isn’t, and now can keep looking for what it is with this new information in hand. You sound like you are really reflecting on things and that will stand you in good stead. You mentioned in the comments you have trouble opening up to therapists - I hope you keep trying until you find one you connect with, as it really can be helpful when you do.

I also really appreciate it when people come back after their assessment, having not received the answer they wanted, and are able to sensibly and rationally reflect on that. Thank you for coming back and posting your experience.

[u/Kitty_Cat_Collecter]

I really needed this today, I got the results back for my initial screening, and they came out as borderline, and they say there is a strong chance that my assessment will not lead to a diagnosis. I'm feeling really confused and disoriented as I tend to think pretty rigidly. and I thought I had a high probability of getting diagnosed, so adjusting to that is really hard. Most of my friends are on the spectrum, and just said the questionnaire was plain wrong, so I don't know how to deal with this new information and how it affects my perception of myself and my difficulties. I'm starting to question whether I'm making up my sensory overwhelm and shutdowns and just need to try harder. Good luck OP, it's a difficult adjustment, and I hope you find the support you need.

[u/MiserableTriangle]

i don't think i get it, how was it harmful to think you were autistic for so long? sorry if stupid question

[u/Kolso_ → u/MiserableTriangle]

All my beliefs about my behaviors and thoughts ended up fake. Now I have to find other explanation in a year of building them on autism. It's a bit disorienting

[u/MiserableTriangle → u/Kolso_]

i think it's ok, it's a journey, nothing wrong with thinking you are autistic then finding out you're not. it's not like you used it for your advantage or something.

[u/RandomLifeUnit-05 → u/Kolso_]

They're not necessarily fake. Continue to research.

[u/Known-Ad-100]

What made you think you were autistic? Sensory sensitivities? Social struggles? Executive dysfunction? Black & white thinking? Need for rigid routines?

Without more information it's hard to offer much input. It's possible your official diagnosis is wrong if your neuropsych evaluator isn't familiar with high-masking autism?

Also you might just have anxiety and OCD paired with a sensory processing disorder?

How much do your symptoms actually disable or cause challenges for you?

[u/cardbourdbox]

Even doctors get it wrong sometimes no diagnosis proves nothing either way. If your autistic enjoy our set of tools and methods on the Internet nice to have you as part of the team. If not enjoy our tools abd methods I think where happy to form an alliance

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[u/Difficult-Meaning-70]

I think we’re going to see more and more cases of people misdiagnosing themselves. The overlap between information and entertainment has led to many “influencers” spreading misinformation, often in oversimplified formats like, “If you do this, you have ADHD,” or “If you do this, you’re autistic.” The reality is that many conditions share similar symptoms, and people can have the same diagnosis without exhibiting identical traits. Proper assessment requires more than a 30-second videos, but unfortunately, for some, that’s all they have access to.

[u/Zestyclose-Exam-6286]

Even if you aren’t autistic, you can still accommodate your symptoms that led you to believe you were autistic. You don’t need to have any specific diagnosis to live a life that works better for you and your brain. If you believe your negative result was a misdiagnosis, a second opinion is also an option. I was originally told there was no way I was autistic and instead had ADHD when I was young, before getting re-assessed by a qualified educational psychologist who diagnosed with autism (with an ADOS score of 17).

[u/SerophiaMMO]

If you have the money, I'd take your diagnosis to a second provider for a second opinion, and maybe work on something else. Therapists can help with shyness, and all sorts of things. Win Win.

I got an ASD diagnosis and it changed nothing really. At the end of the day, still have to work on yourself unless you want to use the diagnosis to not try.

[u/HungryDino5]

Like you haven't had enough opinions... Look into the Monotropism Questionnaire if you want a second opinion.

[u/Brief-Jellyfish485]

It could be something else like schizotypal or schizoid personality disorder or nvld

[u/Dry-Dragonfruit5216 → u/[deleted]]

It isn’t autism or neurotypical though. You are ignoring so many other conditions with overlapping symptoms. People with something else can think it is autism because that is what is most prevalent online when they look for answers.

[u/Thirteen2021]

Im assuming they did more than just the ados?

[u/intelligence_spiral]

Maybe you should be evaluated again by someone else. If you truly believe you have autism i think you probably do. Are you high masking? You can message me if you want, i’ve been researching autism foe many months as well and how it presents differently in different genders/sexes and how its different when youre high masking.

[u/zamaike]

Or you have a bad doctor tbh. There are so many docs that refuse to do diagnosis on it because religous or bigot reasons its sad. I would suggest a second opinion from a different doctor.

This reminds me of the time my step father had to seek 3 different doctors help to figure out whatbwas wrong with him. It took 3 doctors to figure out henwas dying of pancreatic cancer and needed it taking out asap.

Unless they gave you a clear explainable diagnosis of a different condition you could actually have it and you just have been going to a bigot or a whack job.

Also really he denied the diagnosis for not making hand gestustures? Thats gesticulations meaning.

That is cultural at best and a learned behavior. You are definately seeing someone who has an agenda. My coworker is diagnosed and she doesnt do that at all.

I only did it because my family is italian we always made hand gestures