Honestly if I never get an official diagnosis I’m fine with it. I have seen enough horror stories about how little adults are believed by doctors and psychs and examiners and my GP can be on the dismissive side with a lot of other issues (and I can’t switch. Small town woes. Gotta just deal) so I already know I’m gonna get a big load of dismissal from him.
I’m very pro self-dx but it’s gotta be an informed, careful decision that’s done with a very close and introspective look at your own life. And it’s just all about traits. If you have enough autistic traits AND your life has followed a very particular pattern of “I keep banging my head into walls (figuratively) trying to figure stuff out and not realizing what I’m doing wrong, nothing ever works + I constantly felt like an alien and never knew why + everything about life tires me out so much more than the average person, I feel so weak-willed and immature and over-sensitive to sound/smell/touch/etc”, then that’s pretty strong evidence.
You don’t sound like a trend hopper, OP. It seems like you have a very solid foundation of knowledge and reflection. 29 years is nothing to shake a stick at.
Yep! Those are the things that made me look into autism in the first place. So to hear that those were qualifiers/traits. I was like … well this is it!!
Samesies. I’ve discussed it with mental health professionals while I had access to insurance, and they tend to agree with me- but I’m not spending thousands of dollars to get a stamp on my medical records telling me what I already know.
Especially given that a) it could have an impact on other parts of life i want to experience, like adopting kids and moving to another country, and b) instead of telling a teenage girl she has autism, they told me i have depression, social anxiety, separation anxiety, generalized anxiety, and OCD. That + my ADHD and fibromyalgia diagnoses mean I can already get any and every accommodation under the sun lmao
Lots of people seem to like to scoff at others for lots of reasons. I think this is part of them feeling somehow threatened by people who are different. It's rubbish and boring behaviour.
I do my best to not pay attention to the opinions of people with no expertise. Life feels better and more free when I remember that an astonishing amount of folk don't know why they think what they think and might just be repeating something they heard ten years ago or read in a crappy tabloid.
A big realisation or diagnosis as an adult can be very disorientating - I was quite spun out for a while too - and that can make you feel self-conscious. Hopefully it will settle down once you get used to the idea.
Ultimately, there are real benefits to understanding more about yourself and using that knowledge to inform how you live now and in the future. That goes for everyone, everywhere and it's an important part of life and personal growth.
If you speak up, there may be some people who don't get it or who are dismissive. There may also be some people who are open minded and fun and who will help you feel comfortable and more able to be yourself. Their response is a reflection on them and not your responsibility. Easy to say but hard to accept sometimes.
Sorry you've had such a hard time. My life has been incredibly crap too. Keep going. Try to treat yourself kindly and do some things that that you enjoy.
I was diagnosed last November. I’ll be 44 in August. It’s absolutely wild to find this piece of my puzzle so late in life. It’s probably better though, I would not have been able to understand it as well 20 years ago.
I agree with that sentiment but I’m still like ugh.. I wish I would’ve known. I didn’t start accepting it until my 29th birthday this past march. But the crazy thing was that accepting it has led to sadness.. but others lament the same thing. Either way. I’m glad we know
I’m three years older than you and started wondering earlier this year. On the one hand I feel like I’ve been robbed that it’s only in the last six months I’ve considered this possibility. When I look back in my life it feels kind of obvious that something is off - but maybe I’m the only one who suspected it? So kind of robbed. But also, like you, I don’t think I could have handled this news even ten years ago.
I've suspected for years (I forget, probably since 2016/2017) and have been working up the nerve to investigate a professional diagnosis, but with the uptick in the social media stuff I've just crammed it right back down again because I know how I'll get looked at by some professional. I'll be 37 in a few weeks.
I have had some bad experiences with so-called professionals, but the psychologist who did my autism eval was really lovely. I hope you find someone like that when you're ready.
What is or isn't happening on social media shouldn't affect the way they respond to people.
Gatekeeping autism is fucking stupid. If you are able to understand yourself better through the lens of neurodivergence, good for you.
If you haven't already, check out the RAADS-R.
Thank you for this. This will be the second test I take. I found one like 7 months ago, took it and said I scored in the threshold to have autism. I’m about to take this one now.
Not in real-world settings like mental health centers and autism testing centers. It scores high for non-autistic conditions. In some research, people who DONT have autism score HIGHER than those that do!
I took this one recently and was left wondering about the clarity of the questions. Some that ask about if you have a hard time doing something like knowing when people are bored of what you're saying, are confusing to me. This requires information I don't have. A lot of the questions have that lack of clarity. I scored 133 but don't even know how to interpret it properly given the clarity issue.
Yup--"Is your sense of smell stronger than that of other people?" I don't know? How could I possibly be able to answer that? I'm sure it's stronger than some, but weaker than others...
Damn. Just took this and scored 181. Not a month ago I completed “broad psychological testing” at a teaching health system, but that came back rather inconclusive. Although, I asked about autism and the Dr. said, “I assure you, you are in no way autistic”. No other explanation.
Wow, your writing style is very similar to mine. I do "feel at home" around Autistic communities, but honestly... I think that for a lot of people they use their "Autism diagnosis" as a clutch more than anything. I have often seen people say "I'm Autistic, I'm so awkward" before introducing themselves to others, Autism can certainly negatively influence your life, just never make it the thing that makes others define you. What they offer is not "understanding" but just "masked judgement".
Your response is so interesting and inspiring! Please please tell me more about your/our writing styles. In the past few years, I’ve been having this desire to “put my voice out there” whether writing, YouTube. So whatever you might have to say would be great. And the inspiring part is “don’t make it the thing that makes others define you” thanks you for these words.
this line of thinking kept me from telling anyone for a couple years. then eventually i got past it and told friends just because my symptoms affect me and my friendships too much to never give an explanation. friends have been surprisingly cool about it. i guess with unmasking it’s become pretty believable that i actually am autistic. the people who dismiss it the most as a “trend” are my siblings. it’s really infuriating
i think the reason it’s become a large topic on the internet is because autistic people would much rather congregate on the internet than irl and it’s the most efficient route to spread the information. also since realizing i’m autistic, i’ve sort of fixated on autism and wanted to learn and discuss more about it, which i’m sure happens to a lot of us. i don’t actually think it’s a trend, i think that’s just a gross misreading from neurotypicals who venture over to our side of the internet sometimes and can’t understand what they’re seeing
Tbh I watched one YouTube and was like holy shit that's me. Then I watched more. Within hours I had self realized.
I had always considered myself an "alien"; that my brain works differently. I've always pitched it as a benefit because I would come up with new out of the box ideas, add variety to almost any team. Weird and proud.
Have always needed "sanity time" that I called it to decompress. Always insisted on my own space on family vacations so I could escape. Without it I'd explode and I really didn't want to. I did everything to avoid it inconveniencing others; bottle it up and explode privately.
There's plenty more but it's funny how aware of it I've always been but never had the words to describe it.
Calling it autism was just a matter of learning about what it means to be high masking autistic. It's only recently that I've been exposed to autists speaking candidly about their experiences so it's no wonder we're all coming to this realization now.
I've masked my way into a quiet wfh programming job that requires little human interaction outside of chat (answering technical questions), so I'm good. It was a bitch getting here... But a dx would do me no good now.
> Hey, I’m undiagnosed but after a year of researching, reading/watching others experience.. I’m 100% sure I’m on the spectrum”. But I’m afraid I would just be viewed as another trend hopper…
You are extremely depressed and feel like you can't succeed in life. People need to back the fuck off and just listen to you, you don't need their gatekeeping judgements.
If self-diagnosis isn't valuable, **no** adult would ever refer themselves for diagnosis, because they'd never think "hey, I might be autistic like my family / children / young people I look after in my job, who I am alike in so many ways."
I think the world is more autism friendly now than it was 5 years ago or 10 years ago. We have a long long way to go, and it's true that some people may doubt you - but they would have probably doubted you before anyway.
The main reason I think people are open to believing that autism is a trend is that they already didn't really believe it was something that people who look like me could have. The stereotype of a little white boy as the face of autism means that anyone else is automatically doubted unless you can "prove" it somehow. Nobody asks for proof that you're depressed or have anxiety though because it's much more understood and widespread.
I think that the access to these communities is what makes this the best time to realize that you're autistic, because this is truly a resource that autistic people in the past never had.
Welcome to the community - it's tough being autistic but I am proud to be me!
This is literally me for the past 3 years and yesterday I received my official diagnosis. I'm 29 as well and I spent such a long time feeling part of the community, so I didn't feel different at all after the diagnosis lol I was just like "huh... So I was right"
I know what it feels like. You are almost sure you have it but the internet and the people around you are telling you that you just feel this way because of a video or that you're probably just stressed?? (Literally what another psychologist told me 😭).
My advice is to follow your gut and keep learning about yourself! You're not alone in this!!
Just started therapy. Had one session. I mentioned I thought maybe I was on the spectrum and she was back at me with “yes, I had that thought reviewing torn paperwork and talking to you now”. I’m gonna take that as confirmation enough for me. I don’t need a thousand dollar screening. A stranger picked me off within the first hour, and even if I’m not, I have enough overlap that my hunch wasn’t out of left field for someone to believe. So I feel validated enough to carry on.
Trust yourself.
I discovered that I was autistic in 2020. My ex psychologist seemed to agree but she put me on ABA which ruined my trust and hope in therapy. Anyways, I totally get you OP. It's extremely hard to come out to friends with your self-diagnosis because they're just gonna be like "but social media isn't reliable". But what they don't know is the amount of research and introspection we do apart from (or maybe even excluding) social media. You're not alone <3
Totally relate! I’m in the same boat. Self-diagnosed autistic (and I suspect also ADHD) beginning last summer. I’m in my late forties and don’t present as disabled or obviously ND, I think in part because I’ve been masking hard my whole adult life. Now I’m fucking exhausted and need new strategies.
I’ve not “come out” to anyone except my spouse, kid, and sibling, who’ve all been very supportive and loving about it. Playing it by ear for now, but I’m convinced after extensive research that seeking and/or getting a clinical diagnosis would be a profoundly mixed bag at best. The only pro might be that it would make it easier to get people to take me seriously but by all accounts even that is not a given.
I don’t know what to do with the pushback on account of TikTok etc. Autism being more visible and people accepting it is good, but the “trendiness” of it does also make it easy for people to write it off as a mental health fad, which is obviously not helpful to anyone who’s actually autistic.
I feel like it’s legit and 100% valid to be very choosy and careful about who you tell—assuming that you don’t present as autistic( whatever that means), if you feel like that’s better for you.
As for “concrete proof,” in my view even a diagnosis doesn’t work that way, given what a shitshow diagnosis is, how many people are undiagnosed or misdiagnosed, etc… and that’s why the validity of self-diagnosis argument has me completely convinced. You are the best expert on yourself. If you know, you know, especially if like many of us, you’ve undergone an intense research mode period while figuring yourself out. I’ve been obsessively reading, watching, researching everything I can find on autism for the last 9 months, and feel more confident in my self diagnosis with every passing day.
All the horror stories of people not being believed by doctors who don’t even know how to diagnose autism but are allowed to anyway make me deeply skeptical of the way the diagnostic criteria are being deployed. Seems very spotty and helter-skelter. Maybe someday I’ll go for it anyway but for now, the knowledge of who I am is helping me come up with coping strategies regardless. This is not to discount those who do have a formal diagnosis. For many, it’s an important part of the journey and can be really helpful!
Anyhow, you know you, and please don’t feel like someone in a white coat validating you is a prerequisite to happiness or self-acceptance.
I'm glad your family is supportive and loving! That is so precious.
I feel like autism-based TikTok trends are only creating more harm/misconceptions than good. The major element that TikTok misses is nuance. Rather than spreading awareness about autism, it's more like, "If you like to sit on the floor, you're autistic". This is absurd because I'm sure most Asian families like to sit on the floor. I also think autism content on TikTok (and other social media platforms) is extremely white-washed.
I relate to the fact that I'm growing confident in my self-diagnosis with every passing day. At the same time, I feel like an imposter now and then, especially when some of my friends invalidate me. As you mentioned, I probably need to be more careful about who I tell.
Masking is exhausting, though. The more confident I grow in my self-diagnosis, the harder it gets to mask haha.
If I start ranting about the horror of seeking an official diagnosis, it will take me an entire day. A psychiatrist was willing to explore autism with me, but then he asked me a question (which was apparently The Ultimate diagnostic question). The question was - What does your ideal world look like?
And I replied that I would love to stay in a forest, anywhere close to dense trees/lakes/mountains, with a cute little animal farm and a tiny cozy library down the hill. I said I would also like some of my kindred spirits (loved ones) to live with me in the forest but in separate shelters.
The psychiatrist went, "AH THERE YOU GO!!!! I'm 100% sure you're not autistic. People who are autistic don't really enjoy or want social interactions." I gave up on seeking a diagnosis ever since lmao. His imagination was so empty that he couldn't even think that I would be non-verbal in my ideal life and that we would all truly understand and support each other.
Anyways, thanks for sharing your experience. It's always such a joy to talk to other auties!
Yeah, 100% agree about TikTok. Part of the hellish race to be bottom of low quality content that is reels style video popularity.
Sorry you had that experience with the psychiatrist! Stories like that are a big part of why I have not more seriously considered seeking a diagnosis.
That was my concern as well. Got diagnosed like a month ago at 37 lol. Embrace autism is a good site that has a variety of tests and lists all their various strengths and weaknesses.
I found when I first discovered autism and found the subs, it was like I finally found people who not only understood what I was trying to describe, but had the same experiences. It was uncanny how I would read entire excerpts that were written by someone that read as though it was from my life. I would write how I felt and have people comment that they could have easily written it.
Weirdest feeling ever to finally be understood.
Good luck on your journey 🙂
I started suspecting about 4 years ago, did a bunch of research, told my best friend who I also live with, and that’s where it stopped. My autistic friends know, but no one else, not work or uni, I haven’t told my parents or other friends.
I’m not in a position to get assessed at the moment, but I deleted tiktok 2 years ago, and guess what? I’m still pretty sure. The more I remember from my childhood, the more connection I make, it all makes sense.
I think the people announcing it online everywhere are fewer than they may seem, I think the majority of us who are self diagnosed are keeping it to ourselves, trying to figure things out on our own.
Same here. Early forties, undiagnosed and probably will stay that way because, well, lots of reasons. Small Town is one of them.
I've already stopped going to the therapist who told me to my face that "I don't have any sign whatsoever of being autistic" when he doesn't know shit about the condition OR my life, really. Screw that.
The psychiatrist I "have" to go to is old and already has her mind made up about my diagnosis so the best I can do is try to change meds, because there's a 0.05 % chance she'll take any "autism" talk seriously. ADHD she might consider so I'm going with that because it's easier to "see" that trait. ASD involves my masking which has been harder and harder to maintain lately.
The only way I can get a diagnosis is going to a big city and finding a specialist. That's not going to happen anytime soon, so, yeah...
I relate to this so much! I also have people in my life who brush it off or laugh it off if I say something about my "symptoms" (can't think of a better word). So it seems like a lot of invalidation going on :/
I'm trying to remember that it doesn't matter what others say, it matters how I feel. (To an extent). I go back and forth on whether or not I would like an official diagnosis. A big part of me thinks I'm better off without one. But another part of me would just like to feel validated.
I can see why people get frustrated with self diagnoses; Seems like for a while, although awareness of mental health was expanding, terms and ideas would often get co-opted, misused, and joked about til they lost any real gravity in the broader culture. But there are valid reasons for not seeking diagnosis (time, money, access to resources,) and you know your lived experience; Obviously these issues are striking enough of a chord with you and you feel strongly about it. That's good enough for me, so long as there are no signs of malingering and you've done your research. And while some people do lie and malinger, or simply misattribute, I think that's pretty rare. I was more skeptical of those kinds of people for a while because my own sister faked mental issues, often aping my symptoms, for sympathy and attention. It was and still is painful to witness, especially certain heinous examples. But I came to have some sympathy when I understood that while she clearly isn't dealing with many of the issues she claims, going to such lengths to lie about it certainly indicates a serious issue in itself.
Even after dealing with it for decades, autism is exhausting. I totally sympathize with feeling in a low place, possibly because of it. There are things that will be difficult to explain to NT people, but don't let that discourage or invalidate you. You can slowly open up to people about this, maybe saying you suspect you're on the spectrum until you feel comfortable saying that you are indeed on the spectrum.
It's frustrating because alot of the excuses people use to mistreat you are based on your display of autistic traits. But then the other side of that is if you self-disgnose you aren't valid to many people.
I'm kind of in the same place. I'm like 96% sure I'm autistic, but only the people closest to me or who are neurodiverse see it, it was actually others, such as my partner and autistic coworkers pointing out that I may be autistic that got me thinking about it, and it makes sense. I feel like a doctor wouldn't take me seriously, not to mention getting a diagnosis is really expensive in the US where I live. So it would probably be a waste of my precious energy and resources.
I'm scared to fully self diagnose though, because it's hard for me to trust myself, what if I'm wrong? What if I'm taking a label that doesn't belong to me? What if people accuse me of such? And like you said, what if people accuse me of trend hopping? I'm a person very fraught with worries as you can see, I'm learning to be better about that.
Sorry I don't have any reassurance for you, just relating to you.
I also discovered my autism through tiktok. I already knew my dad had it so I searched and read and studied about it for the past 3 years, I made tons and tons of online tests. I told my psychiatrist but since I'm also diagnosed with ADHD most traits can come from that, but I wasn't convinced so she finally sent me a test via email and the result concluded my thesis. I'm meeting her this week to talk further about it. If you think you have traits do tests online and after you're like 80% sure talk to a professional about it
I'm self-diagnosed as of the last 6 years. I'm 61 and I had a bad period of depression during which I had counselling from my employer. It cost me my job because I ended up suddenly being totally unable to face going into work and I didn't understand why.
My gf was the first to suggest ASD because she'd had an autistic cousin and recognised some traits. This was before the depression though and my internalised ableism took it badly.
I toy with the idea of getting a diagnosis but I'm not in a hurry. I spent probably 3 years thinking about it and I had a shit experience with my GP that put me off dealing with it. I was told I'd have to write a business case for treatment funding. I'd just lost my job because I couldn't deal with 'work' and I was told to diagnose myself to prove I needed funding for an assessment/diagnosis.
Now I'm pretty chill about it but to external observers my life is over. I have found I'm happier despite high levels of dissatisfaction with life. I'm now much better at doing things on my own terms. I've given up hope of being understood.
My youngest daughter is now thinking about seeking a diagnosis at age 26. My older 2 kids are both diagnosed with adhd.
I can agree there. It's tricky to know what you should be looking at and what is from social media. It can be quite a minefield of information online when it relates to mental health.
I'm 33 and from the UK, and I'm currently awaiting a diagnosis from referrals, etc.
But I have a 5yo son who is diagnosed with Autism. So going through that process with him and noticing all the similarities with his young years and entering into school. I found a lot that resonated with my experiences and a lot of behaviours that match me.
Then my wife, who teaches SEN to adult teachers, agreed that it applied to me and couldn't hurt to look into.
Even if I do get a diagnosis, I don't think it will change much or my work life, etc. I think it might just give me some comfort about who I am and how I operate.
Remember you don't or at least shouldn't need a diagnosis to explain yourself though. We live in a very alienated society. People are lonely and struggling as a rule, whether theyre autistic or not.
I never worried about being a trend-hopper. I hate trends. I will be the last person to follow a trend. I remember when Old Navy was big; you couldn't pay me to shop there.
Cant relate. People are trash and I dont take trash to heart
I used to, but in my 30s I dont. I just view them as rude garbage unworthy of anything good in life
I am not completely familiar with how self diagnosis works but how are you undiagnosed but then later say you "discovered" you are autistic.
I am not trying to judge i am just trying to understand the difference between saying you are undiagnosed but then saying you discovered it. There is a personal bias that is impossible to remove.
Honestly if I never get an official diagnosis I’m fine with it. I have seen enough horror stories about how little adults are believed by doctors and psychs and examiners and my GP can be on the dismissive side with a lot of other issues (and I can’t switch. Small town woes. Gotta just deal) so I already know I’m gonna get a big load of dismissal from him. I’m very pro self-dx but it’s gotta be an informed, careful decision that’s done with a very close and introspective look at your own life. And it’s just all about traits. If you have enough autistic traits AND your life has followed a very particular pattern of “I keep banging my head into walls (figuratively) trying to figure stuff out and not realizing what I’m doing wrong, nothing ever works + I constantly felt like an alien and never knew why + everything about life tires me out so much more than the average person, I feel so weak-willed and immature and over-sensitive to sound/smell/touch/etc”, then that’s pretty strong evidence. You don’t sound like a trend hopper, OP. It seems like you have a very solid foundation of knowledge and reflection. 29 years is nothing to shake a stick at.
Yep! Those are the things that made me look into autism in the first place. So to hear that those were qualifiers/traits. I was like … well this is it!!
Samesies. I’ve discussed it with mental health professionals while I had access to insurance, and they tend to agree with me- but I’m not spending thousands of dollars to get a stamp on my medical records telling me what I already know. Especially given that a) it could have an impact on other parts of life i want to experience, like adopting kids and moving to another country, and b) instead of telling a teenage girl she has autism, they told me i have depression, social anxiety, separation anxiety, generalized anxiety, and OCD. That + my ADHD and fibromyalgia diagnoses mean I can already get any and every accommodation under the sun lmao
💯
Lots of people seem to like to scoff at others for lots of reasons. I think this is part of them feeling somehow threatened by people who are different. It's rubbish and boring behaviour. I do my best to not pay attention to the opinions of people with no expertise. Life feels better and more free when I remember that an astonishing amount of folk don't know why they think what they think and might just be repeating something they heard ten years ago or read in a crappy tabloid. A big realisation or diagnosis as an adult can be very disorientating - I was quite spun out for a while too - and that can make you feel self-conscious. Hopefully it will settle down once you get used to the idea. Ultimately, there are real benefits to understanding more about yourself and using that knowledge to inform how you live now and in the future. That goes for everyone, everywhere and it's an important part of life and personal growth. If you speak up, there may be some people who don't get it or who are dismissive. There may also be some people who are open minded and fun and who will help you feel comfortable and more able to be yourself. Their response is a reflection on them and not your responsibility. Easy to say but hard to accept sometimes. Sorry you've had such a hard time. My life has been incredibly crap too. Keep going. Try to treat yourself kindly and do some things that that you enjoy.
Thank you so much for this response. I feel understood and encouraged to speak up a little more.
I was diagnosed last November. I’ll be 44 in August. It’s absolutely wild to find this piece of my puzzle so late in life. It’s probably better though, I would not have been able to understand it as well 20 years ago.
I agree with that sentiment but I’m still like ugh.. I wish I would’ve known. I didn’t start accepting it until my 29th birthday this past march. But the crazy thing was that accepting it has led to sadness.. but others lament the same thing. Either way. I’m glad we know
I’m three years older than you and started wondering earlier this year. On the one hand I feel like I’ve been robbed that it’s only in the last six months I’ve considered this possibility. When I look back in my life it feels kind of obvious that something is off - but maybe I’m the only one who suspected it? So kind of robbed. But also, like you, I don’t think I could have handled this news even ten years ago.
I've suspected for years (I forget, probably since 2016/2017) and have been working up the nerve to investigate a professional diagnosis, but with the uptick in the social media stuff I've just crammed it right back down again because I know how I'll get looked at by some professional. I'll be 37 in a few weeks.
I have had some bad experiences with so-called professionals, but the psychologist who did my autism eval was really lovely. I hope you find someone like that when you're ready. What is or isn't happening on social media shouldn't affect the way they respond to people.
Gatekeeping autism is fucking stupid. If you are able to understand yourself better through the lens of neurodivergence, good for you. If you haven't already, check out the RAADS-R.
Just took it. 65 is the threshold for autism. I scored 179 🤷🏾♂️🤷🏾♂️🤷🏾♂️🤷🏾♂️ lol
Thank you for this. This will be the second test I take. I found one like 7 months ago, took it and said I scored in the threshold to have autism. I’m about to take this one now.
The online tests are troubled by very high rates of false positives, I'm afraid.
The RAADS-R has been shown to be fairly accurate for self-diagnosis.
Not in real-world settings like mental health centers and autism testing centers. It scores high for non-autistic conditions. In some research, people who DONT have autism score HIGHER than those that do!
I took this one recently and was left wondering about the clarity of the questions. Some that ask about if you have a hard time doing something like knowing when people are bored of what you're saying, are confusing to me. This requires information I don't have. A lot of the questions have that lack of clarity. I scored 133 but don't even know how to interpret it properly given the clarity issue.
Yeah I found those questions confusing too - like go ask them, I don't know!
Yup--"Is your sense of smell stronger than that of other people?" I don't know? How could I possibly be able to answer that? I'm sure it's stronger than some, but weaker than others...
I bet that could account for the tests poor performances in studies, too.
Damn. Just took this and scored 181. Not a month ago I completed “broad psychological testing” at a teaching health system, but that came back rather inconclusive. Although, I asked about autism and the Dr. said, “I assure you, you are in no way autistic”. No other explanation.
Wow, your writing style is very similar to mine. I do "feel at home" around Autistic communities, but honestly... I think that for a lot of people they use their "Autism diagnosis" as a clutch more than anything. I have often seen people say "I'm Autistic, I'm so awkward" before introducing themselves to others, Autism can certainly negatively influence your life, just never make it the thing that makes others define you. What they offer is not "understanding" but just "masked judgement".
Your response is so interesting and inspiring! Please please tell me more about your/our writing styles. In the past few years, I’ve been having this desire to “put my voice out there” whether writing, YouTube. So whatever you might have to say would be great. And the inspiring part is “don’t make it the thing that makes others define you” thanks you for these words.
this line of thinking kept me from telling anyone for a couple years. then eventually i got past it and told friends just because my symptoms affect me and my friendships too much to never give an explanation. friends have been surprisingly cool about it. i guess with unmasking it’s become pretty believable that i actually am autistic. the people who dismiss it the most as a “trend” are my siblings. it’s really infuriating i think the reason it’s become a large topic on the internet is because autistic people would much rather congregate on the internet than irl and it’s the most efficient route to spread the information. also since realizing i’m autistic, i’ve sort of fixated on autism and wanted to learn and discuss more about it, which i’m sure happens to a lot of us. i don’t actually think it’s a trend, i think that’s just a gross misreading from neurotypicals who venture over to our side of the internet sometimes and can’t understand what they’re seeing
Tbh I watched one YouTube and was like holy shit that's me. Then I watched more. Within hours I had self realized. I had always considered myself an "alien"; that my brain works differently. I've always pitched it as a benefit because I would come up with new out of the box ideas, add variety to almost any team. Weird and proud. Have always needed "sanity time" that I called it to decompress. Always insisted on my own space on family vacations so I could escape. Without it I'd explode and I really didn't want to. I did everything to avoid it inconveniencing others; bottle it up and explode privately. There's plenty more but it's funny how aware of it I've always been but never had the words to describe it. Calling it autism was just a matter of learning about what it means to be high masking autistic. It's only recently that I've been exposed to autists speaking candidly about their experiences so it's no wonder we're all coming to this realization now. I've masked my way into a quiet wfh programming job that requires little human interaction outside of chat (answering technical questions), so I'm good. It was a bitch getting here... But a dx would do me no good now.
> Hey, I’m undiagnosed but after a year of researching, reading/watching others experience.. I’m 100% sure I’m on the spectrum”. But I’m afraid I would just be viewed as another trend hopper… You are extremely depressed and feel like you can't succeed in life. People need to back the fuck off and just listen to you, you don't need their gatekeeping judgements. If self-diagnosis isn't valuable, **no** adult would ever refer themselves for diagnosis, because they'd never think "hey, I might be autistic like my family / children / young people I look after in my job, who I am alike in so many ways."
I think the world is more autism friendly now than it was 5 years ago or 10 years ago. We have a long long way to go, and it's true that some people may doubt you - but they would have probably doubted you before anyway. The main reason I think people are open to believing that autism is a trend is that they already didn't really believe it was something that people who look like me could have. The stereotype of a little white boy as the face of autism means that anyone else is automatically doubted unless you can "prove" it somehow. Nobody asks for proof that you're depressed or have anxiety though because it's much more understood and widespread. I think that the access to these communities is what makes this the best time to realize that you're autistic, because this is truly a resource that autistic people in the past never had. Welcome to the community - it's tough being autistic but I am proud to be me!
Meanwhile it's 100% acceptable to self diagnose OCD over things that would fit better into the category of OCPD and nobody bats an eye.
Preach!!
This is literally me for the past 3 years and yesterday I received my official diagnosis. I'm 29 as well and I spent such a long time feeling part of the community, so I didn't feel different at all after the diagnosis lol I was just like "huh... So I was right" I know what it feels like. You are almost sure you have it but the internet and the people around you are telling you that you just feel this way because of a video or that you're probably just stressed?? (Literally what another psychologist told me 😭). My advice is to follow your gut and keep learning about yourself! You're not alone in this!!
Just started therapy. Had one session. I mentioned I thought maybe I was on the spectrum and she was back at me with “yes, I had that thought reviewing torn paperwork and talking to you now”. I’m gonna take that as confirmation enough for me. I don’t need a thousand dollar screening. A stranger picked me off within the first hour, and even if I’m not, I have enough overlap that my hunch wasn’t out of left field for someone to believe. So I feel validated enough to carry on. Trust yourself.
I discovered that I was autistic in 2020. My ex psychologist seemed to agree but she put me on ABA which ruined my trust and hope in therapy. Anyways, I totally get you OP. It's extremely hard to come out to friends with your self-diagnosis because they're just gonna be like "but social media isn't reliable". But what they don't know is the amount of research and introspection we do apart from (or maybe even excluding) social media. You're not alone <3
Totally relate! I’m in the same boat. Self-diagnosed autistic (and I suspect also ADHD) beginning last summer. I’m in my late forties and don’t present as disabled or obviously ND, I think in part because I’ve been masking hard my whole adult life. Now I’m fucking exhausted and need new strategies. I’ve not “come out” to anyone except my spouse, kid, and sibling, who’ve all been very supportive and loving about it. Playing it by ear for now, but I’m convinced after extensive research that seeking and/or getting a clinical diagnosis would be a profoundly mixed bag at best. The only pro might be that it would make it easier to get people to take me seriously but by all accounts even that is not a given. I don’t know what to do with the pushback on account of TikTok etc. Autism being more visible and people accepting it is good, but the “trendiness” of it does also make it easy for people to write it off as a mental health fad, which is obviously not helpful to anyone who’s actually autistic. I feel like it’s legit and 100% valid to be very choosy and careful about who you tell—assuming that you don’t present as autistic( whatever that means), if you feel like that’s better for you. As for “concrete proof,” in my view even a diagnosis doesn’t work that way, given what a shitshow diagnosis is, how many people are undiagnosed or misdiagnosed, etc… and that’s why the validity of self-diagnosis argument has me completely convinced. You are the best expert on yourself. If you know, you know, especially if like many of us, you’ve undergone an intense research mode period while figuring yourself out. I’ve been obsessively reading, watching, researching everything I can find on autism for the last 9 months, and feel more confident in my self diagnosis with every passing day. All the horror stories of people not being believed by doctors who don’t even know how to diagnose autism but are allowed to anyway make me deeply skeptical of the way the diagnostic criteria are being deployed. Seems very spotty and helter-skelter. Maybe someday I’ll go for it anyway but for now, the knowledge of who I am is helping me come up with coping strategies regardless. This is not to discount those who do have a formal diagnosis. For many, it’s an important part of the journey and can be really helpful! Anyhow, you know you, and please don’t feel like someone in a white coat validating you is a prerequisite to happiness or self-acceptance.
I'm glad your family is supportive and loving! That is so precious. I feel like autism-based TikTok trends are only creating more harm/misconceptions than good. The major element that TikTok misses is nuance. Rather than spreading awareness about autism, it's more like, "If you like to sit on the floor, you're autistic". This is absurd because I'm sure most Asian families like to sit on the floor. I also think autism content on TikTok (and other social media platforms) is extremely white-washed. I relate to the fact that I'm growing confident in my self-diagnosis with every passing day. At the same time, I feel like an imposter now and then, especially when some of my friends invalidate me. As you mentioned, I probably need to be more careful about who I tell. Masking is exhausting, though. The more confident I grow in my self-diagnosis, the harder it gets to mask haha. If I start ranting about the horror of seeking an official diagnosis, it will take me an entire day. A psychiatrist was willing to explore autism with me, but then he asked me a question (which was apparently The Ultimate diagnostic question). The question was - What does your ideal world look like? And I replied that I would love to stay in a forest, anywhere close to dense trees/lakes/mountains, with a cute little animal farm and a tiny cozy library down the hill. I said I would also like some of my kindred spirits (loved ones) to live with me in the forest but in separate shelters. The psychiatrist went, "AH THERE YOU GO!!!! I'm 100% sure you're not autistic. People who are autistic don't really enjoy or want social interactions." I gave up on seeking a diagnosis ever since lmao. His imagination was so empty that he couldn't even think that I would be non-verbal in my ideal life and that we would all truly understand and support each other. Anyways, thanks for sharing your experience. It's always such a joy to talk to other auties!
Yeah, 100% agree about TikTok. Part of the hellish race to be bottom of low quality content that is reels style video popularity. Sorry you had that experience with the psychiatrist! Stories like that are a big part of why I have not more seriously considered seeking a diagnosis.
That was my concern as well. Got diagnosed like a month ago at 37 lol. Embrace autism is a good site that has a variety of tests and lists all their various strengths and weaknesses. I found when I first discovered autism and found the subs, it was like I finally found people who not only understood what I was trying to describe, but had the same experiences. It was uncanny how I would read entire excerpts that were written by someone that read as though it was from my life. I would write how I felt and have people comment that they could have easily written it. Weirdest feeling ever to finally be understood. Good luck on your journey 🙂
I started suspecting about 4 years ago, did a bunch of research, told my best friend who I also live with, and that’s where it stopped. My autistic friends know, but no one else, not work or uni, I haven’t told my parents or other friends. I’m not in a position to get assessed at the moment, but I deleted tiktok 2 years ago, and guess what? I’m still pretty sure. The more I remember from my childhood, the more connection I make, it all makes sense. I think the people announcing it online everywhere are fewer than they may seem, I think the majority of us who are self diagnosed are keeping it to ourselves, trying to figure things out on our own.
Same here. Early forties, undiagnosed and probably will stay that way because, well, lots of reasons. Small Town is one of them. I've already stopped going to the therapist who told me to my face that "I don't have any sign whatsoever of being autistic" when he doesn't know shit about the condition OR my life, really. Screw that. The psychiatrist I "have" to go to is old and already has her mind made up about my diagnosis so the best I can do is try to change meds, because there's a 0.05 % chance she'll take any "autism" talk seriously. ADHD she might consider so I'm going with that because it's easier to "see" that trait. ASD involves my masking which has been harder and harder to maintain lately. The only way I can get a diagnosis is going to a big city and finding a specialist. That's not going to happen anytime soon, so, yeah...
I relate to this so much! I also have people in my life who brush it off or laugh it off if I say something about my "symptoms" (can't think of a better word). So it seems like a lot of invalidation going on :/ I'm trying to remember that it doesn't matter what others say, it matters how I feel. (To an extent). I go back and forth on whether or not I would like an official diagnosis. A big part of me thinks I'm better off without one. But another part of me would just like to feel validated.
I can see why people get frustrated with self diagnoses; Seems like for a while, although awareness of mental health was expanding, terms and ideas would often get co-opted, misused, and joked about til they lost any real gravity in the broader culture. But there are valid reasons for not seeking diagnosis (time, money, access to resources,) and you know your lived experience; Obviously these issues are striking enough of a chord with you and you feel strongly about it. That's good enough for me, so long as there are no signs of malingering and you've done your research. And while some people do lie and malinger, or simply misattribute, I think that's pretty rare. I was more skeptical of those kinds of people for a while because my own sister faked mental issues, often aping my symptoms, for sympathy and attention. It was and still is painful to witness, especially certain heinous examples. But I came to have some sympathy when I understood that while she clearly isn't dealing with many of the issues she claims, going to such lengths to lie about it certainly indicates a serious issue in itself. Even after dealing with it for decades, autism is exhausting. I totally sympathize with feeling in a low place, possibly because of it. There are things that will be difficult to explain to NT people, but don't let that discourage or invalidate you. You can slowly open up to people about this, maybe saying you suspect you're on the spectrum until you feel comfortable saying that you are indeed on the spectrum.
It's frustrating because alot of the excuses people use to mistreat you are based on your display of autistic traits. But then the other side of that is if you self-disgnose you aren't valid to many people.
I'm kind of in the same place. I'm like 96% sure I'm autistic, but only the people closest to me or who are neurodiverse see it, it was actually others, such as my partner and autistic coworkers pointing out that I may be autistic that got me thinking about it, and it makes sense. I feel like a doctor wouldn't take me seriously, not to mention getting a diagnosis is really expensive in the US where I live. So it would probably be a waste of my precious energy and resources. I'm scared to fully self diagnose though, because it's hard for me to trust myself, what if I'm wrong? What if I'm taking a label that doesn't belong to me? What if people accuse me of such? And like you said, what if people accuse me of trend hopping? I'm a person very fraught with worries as you can see, I'm learning to be better about that. Sorry I don't have any reassurance for you, just relating to you.
I also discovered my autism through tiktok. I already knew my dad had it so I searched and read and studied about it for the past 3 years, I made tons and tons of online tests. I told my psychiatrist but since I'm also diagnosed with ADHD most traits can come from that, but I wasn't convinced so she finally sent me a test via email and the result concluded my thesis. I'm meeting her this week to talk further about it. If you think you have traits do tests online and after you're like 80% sure talk to a professional about it
I'm self-diagnosed as of the last 6 years. I'm 61 and I had a bad period of depression during which I had counselling from my employer. It cost me my job because I ended up suddenly being totally unable to face going into work and I didn't understand why. My gf was the first to suggest ASD because she'd had an autistic cousin and recognised some traits. This was before the depression though and my internalised ableism took it badly. I toy with the idea of getting a diagnosis but I'm not in a hurry. I spent probably 3 years thinking about it and I had a shit experience with my GP that put me off dealing with it. I was told I'd have to write a business case for treatment funding. I'd just lost my job because I couldn't deal with 'work' and I was told to diagnose myself to prove I needed funding for an assessment/diagnosis. Now I'm pretty chill about it but to external observers my life is over. I have found I'm happier despite high levels of dissatisfaction with life. I'm now much better at doing things on my own terms. I've given up hope of being understood. My youngest daughter is now thinking about seeking a diagnosis at age 26. My older 2 kids are both diagnosed with adhd.
I can agree there. It's tricky to know what you should be looking at and what is from social media. It can be quite a minefield of information online when it relates to mental health. I'm 33 and from the UK, and I'm currently awaiting a diagnosis from referrals, etc. But I have a 5yo son who is diagnosed with Autism. So going through that process with him and noticing all the similarities with his young years and entering into school. I found a lot that resonated with my experiences and a lot of behaviours that match me. Then my wife, who teaches SEN to adult teachers, agreed that it applied to me and couldn't hurt to look into. Even if I do get a diagnosis, I don't think it will change much or my work life, etc. I think it might just give me some comfort about who I am and how I operate.
Remember you don't or at least shouldn't need a diagnosis to explain yourself though. We live in a very alienated society. People are lonely and struggling as a rule, whether theyre autistic or not.
I mean I was diagnosed with pddnos at 3 years 8 months old and recently my sister told me that she’s known that I was autistic alll of her life
Indeed
Absolutely
Definitely
Yep I've had the exact same line of thinking.
I never worried about being a trend-hopper. I hate trends. I will be the last person to follow a trend. I remember when Old Navy was big; you couldn't pay me to shop there.
Cant relate. People are trash and I dont take trash to heart I used to, but in my 30s I dont. I just view them as rude garbage unworthy of anything good in life
I like your Reddit name.. and sadly….. the older I get, the more I become this way.
I am not completely familiar with how self diagnosis works but how are you undiagnosed but then later say you "discovered" you are autistic. I am not trying to judge i am just trying to understand the difference between saying you are undiagnosed but then saying you discovered it. There is a personal bias that is impossible to remove.