I’ve been internet-diagnosed with autism plenty of times, but the one time I went to get evaluated, they said I didn’t have “it.”
But if it’s a spectrum with different combinations of different traits at different levels of intensity, maybe a diagnosis is irrelevant and what matters is what your constellation of traits actually is, regardless of an official diagnosis (which, let’s face it, is probably highly subjective outside of some constellations–that is to say, with a long enough list of psychologits, I could probably get a dx).
Personally, for me, what this means is I can look to autistic literature to see what resonates with me without worrying about the fact that I don’t share many of the hard markers for autism. For instance, my investment in the truth often conflicts with social niceties even though I can read people’s emotions. I can see myself as an unofficially atypical person in a lot of ways.
I’ll leave my resonsances in the comments below. Feel free to share yours.
I have “peer-reviewed” autism in which all my friends have autism and anything I am interested in is already filled with autistic people.
I’m a girl, so I never stood a chance at having a proper diagnosis in childhood. All they gave me was an ADD diagnosis. Never mind that I couldn’t wear school uniform pants because the texture felt too bad and scratchy or that I was ‘tender headed’ and every tag on my clothing had to be removed and that all the white in Walmart made me very dizzy nauseous and exhausted and perfumes gave me migraines. I was just “weird and friendless” and just had to stop complaining so much and maybe I had no friends because all I did was whine about everything.
I see no value in seeking an official diagnosis when it can just be used against you politically or when you try to gain citizenship elsewhere. It’s not safe. I’m in a job filled with neurodivergent people, so I’m okay.
I’m a peer-reviewed autistic man in social work; it’s not great.
I don’t think the mental health system is safe for anyones, less so for neurodivergent people.
I’m not sub clinical so I will put my reply behind a spoiler to minimize my intrusion on this space.
spoiler
I think it is a massive disservice to treat autism only as a disability. I think it harms ‘subclinical’ people and also people who are identified by medical diagnosis as requiring supports.
ETA: because it is only diagnosed when it a disability, it is sometimes viewed with shame and diagnosis and access to support is sometimes avoided for fear of stigma. This is particularly harmful when a parent chooses to deny a child access to care. Children are literally beaten into acting 'right: (its me, I’m children) rather than being understood.
OP mentioned ‘different levels of intensity’ which might be saying the same thing as I am about to, but I think it’s critically flawed to make autism diagnosis contingent on “clinically significant impairment in daily, social, or occupational functioning” because there is no good way to quantify the impact of masking.
I do hold the view that autism is a disability but when I say that I am referring mostly to the autism diagnosis which requires it to be debilitating. In addition to that, I agree with the social model of disability and that for at least some people they would have no or less impairment if society wasn’t built to only accommodate neurotypocals.
I think we lose a lot of data (unacceptable, frankly) by ignoring the experience of a massive set of neurodivergent people and how they experience the world. We lose the opportunity to understand each other better.
I’m late diagnosed and I think the only reason I got the diagnosis is because burnout nearly killed me. I can’t help but think of and mourn for all the people who died or had their quality of life severely impacted by being forced to raw dog life in a neurotypical world. How much shame people carry because they are called lazy or bad because they don’t fit in. How people pass that trauma on to their children.
ETA: I don’t think diagnosis is a magic bullet to a better life, but I’m imagining a better future where one of the first steps might be actually supporting people who have medically diagnosed disabilities and maybe once we figure out it’s not such a big deal then people will be like “we could do this for literally everyone, huh?” I’m in the process of turning diagnosis into supports and accomodations and it’s fucking exhausting. The process is abelist as hell.
This is why I strongly support self diagnosis and accomodations for self diagnosed people. More widely, I think people should be given the space to identify what they need to live a happy and healthy life and to be able to ask for accomodations to achieve it. I don’t think this takes away from people who need more supports than others. There isn’t a limit amount of caring and understanding we can give people.
Anyways, I’m hoping luxury gay space communism does away with the need for people to need to ask for support and we can all literally just vibe.
why I strongly support self diagnosis
As someone in a developing world, where access to mental professional is virtually impossible, due to cost, availability, competency of doctors( lots of doctors here are down right malicious), and safety, I know that in truth, the majority of the people in the world, both developing and developed, dont have access to an official diagnoses.
Techinally I am now diagnosed with ADHD(though not autism) but amphetamines, the most effective drug for ADHD, is banned in my country. So even a diagnoses doesn’t guaranty you support, depending on where you are in the world.
I hate the conversation about self-diagnoses because there isn’t that acknowledgement. Most of the world has access to the internet, in some form. People are gonna use labels that resonant with them. I am even luckier than most, I self-diagnosed myself 5 years before my official diagnoses, because I only now have the money and resources to do so. Most self-diagnosed people want to seek professional help and get actual accommodations, bit there is no acknowledgement that is a privilege.
Just like being poor is a sin, being self-diagnoses is its own sin.
My diagnosis cost $3,600 in Canada where we apparently have universal health care because I couldn’t wait any longer. There was a wait list for that too, but just a few months.
I had been on a waiting list for a psychiatrist to who may or may not have been able to diagnose, we hadn’t even gotten that far in terms of discussion. I didn’t hear for a year so I called the clinic to ask and I got told that the doctor had left that clinic and gone to another so I was not in any waiting list and could expect another 16 months before anyone could see me. They said they told my GP’s office but my GP says he had nothing on file so if I hadn’t called I would never have known.
This is not to diminish your experiences, but to share how my individual privilege was used above the privilege I have living where I do.
You can get rid of the spoiler tag, brother, we’re all in this together. I’m happy to discuss this topic with everyone, including people who feel like maybe I shouldn’t be having this discussion here.
Yes, I think you touched on exactly my problem. We have neurodivergence, but you can’t say you’re OFFICIALLY neurodivergent unless it’s DEBILITATING. But being divergent isn’t about a disability, it’s about difference.
Politically, it’s a bit of a mess. People with autism want to overcome the stigma of it being a disability by recasting it as a style of interacting with the world, but if they leave the disability model, they lose legal protection.
Thank you but I’m going to leave it because I think edits get confusing with federation. Yes I did edit to add other stuff. No I can’t make it make sense lol.
I think it’s possible to talk about autism both as a neurotype and a disability but it’s hard for neurotypicals because they love implied meaning and hate when things are super specific and detailed lol.
Yes, I think you touched on exactly my problem. We have neurodivergence, but you can’t say you’re OFFICIALLY neurodivergent unless it’s DEBILITATING.
I want to further clarify that it only looks at how debilitating it is right then (or up till then) and that’s a problem. Wouldn’t it be great to support people before they suffer?
Anyways consider yourself peer reviewed fellow autist. Your sonic the hedgehog plushie will arrive in the mail in 3-5 business days. (Reference.)
“we could do this for literally everyone, huh?”
Fucken A, yes!!
Imagine a society where you could say, “You know what, this makes me uncomfortable and I’d like to achieve the same exact result this way instead” without having to get the entire psychiatric establishment and congress and judicial system involved in it every fucking time.
Thank you for the sonic plushie. I shall display him proudly next to my Certificate of Sanity.
ETA: I also sometimes want to say, “I’m autistic” because I have these traits, but I don’t like to say that because people will think I mean I can’t read emotions or detect sarcasm.
I am technically subclinical, in that I got evaluated and was not given a diagnosis of autism/ASD. However, the guy doing my eval said “If thia were 10 years ago, I would give you a diagnosis of Aspergers, but that doesn’t exist anymore, so I can’t give you a diagnosis.”
It wasn’t until I talked to my therapist, who had referred me, that I realized that Aspergers doezn’t exist because it was rolled into ASD. Meaning I likely did qualify for a diagnosis. But the guy decided to say my symptoms were all due to my trauma, ignoring the fact that quite a bit of that trauma was the result of me having these traits and my parents labelling me a difficult child as a result.
I sought a diagnosis mostly because I have a lot of sensory issues and communication difficulty, and I had several diagnosed friends who said I was likely on the spectrum.
Thanks for the example: psychology is not science, it’s feels. That’s why I don’t really value a diagnosis per se because if I get it or not might just depend on who I see.
So you have all these traits but no diagnosis. What have you learned about autism that’s helped you understand yourself? Or at least does it help you feel “normal”, that is to say that you are the way you are because you were born that way and not from trauma?
The biggest thing that I learned was that I had to redefine what my path to trauma recovery would look like. There are a lot of things that I do that I attributed to coping with trauma, but now I need to ask myself what I am trying to do and whether I should seek to stop doing those things.
For example, since that explanation is a bit convoluted: as a kid, I learned how to walk very quietly by walking on the balls of my feet, because it was useful for getting a snack from the pantry when I was refused dinner. But I also just like walking on my toes sometimes, and learning that this is common among people on the spectrum helped me accept that.
It also helped me look at my childhood and see how much of my trauma was a response to me struggling with that divergence. Having trouble managing emotions to the point of panic attacks at age 8 I can now recognize as autistic meltdown. There were many cases where I was labelled maliciously compliant to orders, and I now understand that it was because I was interpreting the command very literally, which is still something I struggle with as an adult.
My most recent meltdown at work was when someone from a different department asked me to violate a policy and nobody in my department–including my direct supervisor–gave a shit.
Like you as an 8-year-old, I was more upset that nobody cared it was a violation of policy than that I was being asked (quite rudely, may I add).
I also had a GF refer to me as “Mr. Literal” because I was always correcting her speech if she was being imprecise… I also sometimes get in trouble at work for wanting to correct sloppy verbiage. “People know what it means,” is not a good solution.
Diagnosis or not matters in the sense that it is useful intel for you and a tool. Just writing detailed essays and having strict logical structures in forums gets called autism on the internet. But if the internet communities for autism are useful to you and you are doing no harm that is good too.
Labels and definitions are useful in diffenerent contexts, and I would encourage you (and everyone) to (continue) applying them only as appropriate and beneficial to wellbeing and growth.
I like the oxford method and defining words and concepts before discussing them with people. You are being very transparent about what subclinical-autism in your case means. I think that honesty is very good and what helps prevent harm.
Someone doesn’t have to be Capital A Autistic with clinical presentation of Autism Spectrum Disorder (>pet peeve: disorder is in the name people! If you are NOT feeling disordered, you likely don’t have ASD!<). But being autistic in character or presentation on a subclinical level is valid too. And there are a lot of valid reasons why people cant receive that diagnosis. I know some severely autistic people that arnt diagnosed formally with ASD. I like the words autistic or neurospicy or neurodivergent for that, rather than ASD. I am now adding ‘subclinical autism’ to my list. Such an interwsting concept.
I think a lot of fights within the community stem from lack of oxford method definition, argument in bad faith. People conflating terms.
There are conditions that look a lot like autism, but are not. Other possibilities to consider are a high IQ measurement, OCD, ADHD, or a number of related conditions. All valid. Self-discovery is very valuable for personal development and I would encourage you to explore what voyld be the root causes of the phenomena you are experiencing, while also not leaving the autistic community which benefits greatly from your honest participation.
I do question the value of a diagnosis as “useful intel” because if you go in with a bunch of traits, but don’t get a diagnosis, you still have those traits. Likewise, if you do get a diagnosis, you still have those traits. The precise boundaries that the individual evaluator uses to determine autism is really the only thing you learn by getting evaluated.
I might steal “neurospicy” because it has no definition and people aren’t going to gatekeep it as much.
Thank you for your kindness.
My constellation:
- almost physical pain at small talk
- primarily socializes over the internet since high school
- a big believer in systems and rules
- immediately pointing out flaws without thinking about social repercussions (this one is totally sinking me in job interviews; seems like every interview I somehow manage to criticize someone or their organization indirectly; you’d think people would be interested in feedback–they are not, they want praise at all times)
- career disaster due to my not being able to play politics or even be interested in having relationships with people just because they can help my career
- kind of brainy hobbies–languages, music
- I literally have no real friends (but apparently 40% of the US doesn’t either, and the remaining 60% are probably in denial)
I will also add that I think I would like a diagnosis because then the ADA would at least offer me some protection at work, but ultimately, going to a job where everyone hates you is usually not worth the paycheck, but an ADA violation at least slows the clock on getting fired.
No real friends? I thought I was alone in that!
(Well, I also do not have internet friends but…)
Oh, I consider this socializing. It’s like a cocktail party where everyone wears the same brown paper bag and I come every day and don’t know who I’m talking to. I don’t have any internet friends, either.
Honestly, I should probably read more about autism. It seems that every time I hear something about autism, I think “oh wow, that’s me!”
I don’t particularly want to be diagnosed yet: the current US administration is concerning, and I’m not sure what the practical benefits would be.
Your comment has been filed under “Tips for the Coming Genocide.” I don’t check the hispanic box on ANYTHING these days.
But the CURRENT benefit of getting an autism diagnosis is that it qualifies you for Americans with Disability Act protections (ADA) at work. For instance, if they’re trying to fire you for being “anti-social”, for instance, they couldn’t legally do that if you had an autism diagnosis.
I knew a guy that introduced himself immediately as having autism. He was socially quite terrible and would go into fits of rage when he felt people weren’t respecting him. His old store didn’t want to risk firing him and risking an ADA lawsuit, so they put him forward as an internal candidate to our store with absolutely GLOWING reviews (I’d worked at his store for a few weeks and saw that he was a disaster), and the reviews were so glowing that he was promoted at our store into a SUPERVISORY position. Within a few months, everyone hated him and he almost got into a few physical altercations with other coworkers. But even then–and there’s cameras everywhere–he wasn’t fired, just transfered to a different position, setting up displays at various stores where he could work alone.
I felt bad for him because he was really wanted a lot of social contact even though he bungled every relationship and I don’t think he’d be happy working by himself.
Edit: Other benefits of ADA protections are you can get accomodations that make work easier, like being allowed to wear headphones, etc.
I’m not at risk of being fired, and I don’t need any extra support (though headphones would be nice). Overall, not worth risking the diagnosis.
I think mental health is like this in general. Nothing is unique and everyone has a bit of everything. Some is just so low as to be zero or so high it dominates the personality. Im not sure if I have anything but when someone mentioned this thing with like perception of your body in space and really made me wonder given the way I have been through my life. I was trying to look into it and and moved primary care to get into the medical group that has a guy that diagnoses neural things but he does not take the insurance.
Yup. Everyone has a bit of everything, the question in psychology is if it INTERFERES with your life in a significant way or not.
But what would a diagnosis change for you? If you got one or your didn’t?
my main concern is it might be more core to other things. I will be seeing someone for depression and it would sorta suck if dealing with a nerological issue ameleorated the depression.
I’ve been wanting to get tested for ADHD and/or autism, just haven’t really been able to make ends meet to get started :(
I think the biggest ‘tell’ for me was how ostracized I was when I was in school. I made one friend in 1st grade who moved away at the end of the year, and the kids who remembered her after called her ‘weird’. After that I had to force myself into groups to gain any kind of social experience at school, but was completely ignored once hours ended. I was a very lonely child and I don’t want to think it’s just because I’m introverted.
Every few years I had to find a new ‘friend’ group because the previous one stopped pretending they liked me.
What’s your social situation now?
I think I HAD a good deal of social anxiety, but now that I’ve mostly overcome it, I find that people just don’t want to be my friend.
It’s better, in the sense I have a lot of friends who genuinely like me and I don’t feel like I have to suppress who I am to be accepted anymore. The downside being that they are all online friends. I have two that are close enough to meet up within a day, but it’s still a long drive for either of them. Socially I’m enriched, but I still miss physical precense sometimes. And I have no idea what people really do together offline.
I do have to be careful when meeting new people though. I’ve come to the realization I can’t be the one to make the first move because my full personality is way too intense for some people to handle. I almost made a new friend a few months ago but I scared them off at some point :/
My resonance is this comedy special: https://www.youtube.com/watch?v=tGbZqHU-Xew
And this thread I found it in: https://glammr.us/@jessamyn/116836871731695981
This is one of the central themes in Janet McNamara’s comedy special, seeing multiple therapists to see if she’s autistic.
She got the “do you have problems with tags in your clothing” question, answers no.
Actual answer is, of course “I don’t have problems with tags because I have a system”
(me, I don’t have a problem with mealtimes because I Have A System)
Yes! The algorithm served me what I think is a slightly tighter set of her autism story, and it made some strings hum in the guitar of my mind… she’s the proximal cause of this post.
That’s awesome :D
Subclinical might just mean that you (currently) dont have a support need, within the confines of what healthcare and disability services can provide. I am diagnosed but have arguably slipped out of the clinical zone. On paper I could probably have my diagnosis removed, but I know that this sort of mobility goes both ways. I think this is why recognising even subclinical autism is important, since life might suddenly change for the worse, and then we might need help.
idk my psycho said i have autistic traits but not enough for ASD, but the problem, is my insane cencorship with him, and quite messed up history before, and a lot of doctors hate self-diagnosts and overall neurodiversity, here they usually put instead schizo for me(+ im trans + adhd)
but awwtistic awwdhd explains my life a lot, and bullying from childhood a lot(+gender nonconformy), i have a lot of traits, weirdness, etc
i feel disable as hell lol
I had a diagnosis of bipolar disorder rob me of about 20 years of my life.
Be wary of defining yourself by diagnoses and getting into systems where you are a “patient” that needes to be “fixed.” Seeing yourself as ill can be more debilitating than an actual illness.
What I’ve learned is that nobody can know me better than I know myself (and also that knowing oneself is a process that sometimes involves risk).
i never mentioning autism/adhd to doctors, because they will jsut laugh and said that i schizo like they did with my transness, however, i’ve never mentioned transness too, just my mom was put me in this fcking system,
they was patholizing even my talking style, at that moment it was slow, sad, quite, they dont like every trait in me, and yeah transness
i was all life weirdo kid, and they “onset at 12yo, set phone password, started growing hair”
i just avoid psychiatry system, also aaaaaaaaa i cant trauma dump again toooooooo, it was insane
to fix everything in me, like transness, weirdness, they bump me with antipsychotics and i got damage from them(muscle motor problems), also cptsd lol
there the unfun https://piefed.blahaj.zone/c/mtf@lemmy.blahaj.zone/p/833874/my-brain-was-fucked-by-doctors-thanks-you-doooctoor
Criminey.
I can’t say that psych meds ever did anything but make me manic, and they probably did numb my ability to feel emotions. Are you off all of them now?
I got off pretty light–didn’t geta full night’s sleep for close to eight months when I was tapering off Latuda, but everything else was easy peasy.
You know what helped me most? Playing music. Too bad I can’t send an institution a few hundred bucks a month to play it and also pay a certified professional give me monthly permission to play it, otherwise maybe I would have gotten to it sooner.
only tapering sert
everything is good except wanting drugs(maybe still hostile environment?) for euphoria, problems w motor idk its like body armoring,
Yeah, sounds like you’ve got stuff going on.
The reddit sub r/therapyabuse has a pretty good sidebar for ideas on how to cope/deal/heal without participating in an abusive mental health system… maybe there’s some ideas there.
By euphoria, do you mean you like getting high?
By euphoria, do you mean you like getting high?
yuh, my dopamine receptors are fucked by antipsychotics
Austistic traits run in one side of my family very obviously, but if any of us got tested it would be borderline at best. At the same time, it’s hard to talk about it because when most people think of autism, they think of the extreme high support needs kind of autism. Which, I found out, is pathologically different from the genetic kind of autism - that one arises from genetic mutations vs passed down genetic traits*. I think merging the autism and aspergers diagnoses did a lot of disservice to the social understanding and acceptance of higher functioning autistic people even if it made it easier for them to get disability services (i.e., insurance reasons as always). Because so many different pathologies and presentations get unduly conflated and merged, I really agree that it’s much more helpful at the individual level to do what you’re doing and just find strategies for coping with the specific aspects that resonate with you.
*correct me if I’m wrong on any of this, I’m not super well informed.
but if any of us got tested it would be borderline at best.
Ironically, I thought this way about myself for a long time. When I got evaluated as an adult, I got high scores for most things. Turns out, what I thought was borderline, was not borderline at all, I am just good at masking, for my own detriment. I am not saying it is the same for anyone else, who knows, but sometimes people perceive themselves very differently, than mental health professionals do - in all directions.
The real issue is that we live in a society that doesn’t respect us individuals, so we need to qualify into a diagnostic category to have any kind of rights. That diagnostic category needs to have a enough people in it that it has political power (what was likely behind the merger of Aspergers and Autism into autism spectrum disorder), but not so many people that it loses legitimacy.
It’s largely a political project.
Subclinical == can cope with life outside a clinic?
I can’t cope with life inside of a clinic either lol
But if you are asking about the definition it means not checking off enough boxes in terms of diagnostic criteria.
(I copied this from a resource on child diagnosis but same applies to adults. I should also be clear not all places in the world use the same criteria so I’m using mine as an example.)
To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).
In addition to meeting these, the traits must:
- must be present in the early developmental period (childhood)
- symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning
- these disturbances are not better explained by intellectual disability or global developmental delay.
So if you have a lot of struggles but don’t show 2 of four of the repetitive behaviors you won’t get diagnosed. Same as people who check off enough of the traits but haven’t had significant challenges because of the sheer luck of living a life that is coincidentally accommodating. Don’t remember your childhood or don’t have old report cards or people who can objectively describe your behavior as a child? You’re out of luck!
Generally, the medical system doesn’t get involved until something “significantly impairs functioning” in one or more different realms. So if someone has all the traits of X, but it doesn’t get in the way of their socializing or working or jerking off, they don’t get a diagnosis. There are some exceptions to this–like hallucinations will probably always land you a schizophrenia diagnosis, but the general idea is that the medica system should not get involved when there isn’t an actual problem.
For “sub-clinical” I just mean any constellation of systems that doesn’t fully meet the official critera. So there’s usually a list of things and people need to have 3 things off one list, at least one of another list, and they can’t have anything on this other list. So sub-clinical would be someone who meets many of the criteria for diagnosis, but not ALL of them.
Funnily enough, you can have hallucinations without schizophrenia. Other than things like dementia and vision loss, narcoleptics (like me) experience hallucinations and apparently much more vividly than schizophrenics typically do, but without the delusion that it’s real.
But I agree with your general point, unfortunately it does also extend to hallucinations not being a big deal to doctors. They genuinely only care if you’re actively dying, a threat to yourself/others, or have something normal like diabetes. If you casually tell them you hallucinate, most of them will just look at you weird and move on.
I’ve never gotten tested for autism, but I imagine many doctors will do the same based on their preconceived notions of autism (e.g., oh you’re physically capable of making eye contact and not visibly stimming without a meltdown? Why are you even here?)
Edit: I just realized this is slightly off-topic from sub-clinical vs clinical. Moreso my experience of doctors using their personal beliefs rather than actual clinical criteria to check off if someone meets the threshold for a diagnosis.
Yes, thank you for clarifying about hallucinations.
I was thinking about schizophrenia in this context because it does seem to be treated completely regardless of whether it significantly impairs a person’s life or not. I’ve heard this from plenty of people with schizophrenia diagnoses who had to fight their way out of the medical cage they were put in.
I don't think i'm autistic but i think i can clearly articulate why i might seem autistic to some people. This is just going to be me listing off traits. I am however diagnosed moderate ADHD
- i like lists and categorising things. I went through a big phase of teenagehood where i liked to rank and classify things, because i had just discovered tierlists
- I like speaking and communicating very formally and properly.
- quiet speaking voice
- speach tics/saying or repeating phrases for tiny crumbs of dopamine
- mentally tired from talking a lot or doing a task i’m not interested in. Also get tired very easily, i’m hoping this is an allergy thing because it’s a nee problem and i’ve been trying to solve this problem with my doctors a lot this year)
- take pride in being smart and knowing things including “fun facts” especially if it’s a quirky history thing. Counterpoint: this is less about the factoids themselves, and more about if there’s an interesting story to tell around something.
- big human driven system things like workplaces, legal systems, national bureacracy, educational institutions and systems, they really interest me. As does politics.
- actually put effort into school, act focused and interested in uni and did so at school. Neurotyoicals seem to hate people doing this, which is ironic because they would traditionally have been labelled as disruptive ADHD sufferers. Either everyone has adhd nowadays or neurotypicals just love making school worthless to go to.
take pride in being smart and knowing things including “fun facts” especially if it’s a quirky history thing. Counterpoint: this is less about the factoids themselves, and more about if there’s an interesting story to tell around something.
My mom is visiting and I’m realizing that I only want to talk to her if it’s about concrete topics (which could include concrete but does not include any discussion about myself lol). It has nothing to do with her, rather that people I deal with in my daily life know better than to attempt that conversation pathway because I will just glitch lol
