Self-diagnosing autism/neurodiversity
June 5, 2020 8:34 AM Subscribe
Did you self-diagnose autism? I want to hear about it. How did you do it? How confident were/are you in your diagnosis?
I'm a 30 year old woman, and over the past three years, I've been increasingly convinced that I'm autistic. It started when I read an article about adult women getting diagnosed, and the article sounded like it was describing me. Since then, I've done more reading and taken a number of online tests (including the autism quotient, aspie quiz, and RAADS-R), and all have scored me squarely in the neurodiverse range.
Even before all this, I had a therapist who was convinced I should get tested for autism. But at the time, I had no idea that autism can present differently in girls than in boys, and I didn't match the pop-culture depiction of autism, so I thought it was ridiculous. But now that I know more, honestly, it makes so much sense and explains so much about me and why certain things have been so hard despite all my best efforts.
That said, at this point, I have no plans to pursue a formal diagnosis. It costs too much (the biggest deterrent), almost no one diagnoses adult autism in my state, and the one person that does doesn't give any indication that they'd be able to diagnose autism as it presents in women.
But. Without that formal diagnosis, I can't help but keep second-guessing myself. It doesn't help that the few people I've mentioned it to have responded by saying that of course I'm not autistic (because I don't present like the stereotypes they have). My understanding, though, is that self-diagnosis is usually relatively accurate and is widely accepted by neurodiverse people.
So in the pursuit of validation and/or a reality check, I'd love to hear about any neurodiverse self-diagnosis experiences. What tools/tests did you use to self-diagnose? What level of confidence did you have in your diagnosis? What label did/do you use for yourself (e.g., autistic, neurodiverse, etc.)? If you ended up pursuing a formal diagnosis, did it confirm what you already thought?
(Please note that I'm not really interested in whether or not formal diagnosis is worth it. Even if I thought it was, I simply cannot afford it anytime soon.)
I'm a 30 year old woman, and over the past three years, I've been increasingly convinced that I'm autistic. It started when I read an article about adult women getting diagnosed, and the article sounded like it was describing me. Since then, I've done more reading and taken a number of online tests (including the autism quotient, aspie quiz, and RAADS-R), and all have scored me squarely in the neurodiverse range.
Even before all this, I had a therapist who was convinced I should get tested for autism. But at the time, I had no idea that autism can present differently in girls than in boys, and I didn't match the pop-culture depiction of autism, so I thought it was ridiculous. But now that I know more, honestly, it makes so much sense and explains so much about me and why certain things have been so hard despite all my best efforts.
That said, at this point, I have no plans to pursue a formal diagnosis. It costs too much (the biggest deterrent), almost no one diagnoses adult autism in my state, and the one person that does doesn't give any indication that they'd be able to diagnose autism as it presents in women.
But. Without that formal diagnosis, I can't help but keep second-guessing myself. It doesn't help that the few people I've mentioned it to have responded by saying that of course I'm not autistic (because I don't present like the stereotypes they have). My understanding, though, is that self-diagnosis is usually relatively accurate and is widely accepted by neurodiverse people.
So in the pursuit of validation and/or a reality check, I'd love to hear about any neurodiverse self-diagnosis experiences. What tools/tests did you use to self-diagnose? What level of confidence did you have in your diagnosis? What label did/do you use for yourself (e.g., autistic, neurodiverse, etc.)? If you ended up pursuing a formal diagnosis, did it confirm what you already thought?
(Please note that I'm not really interested in whether or not formal diagnosis is worth it. Even if I thought it was, I simply cannot afford it anytime soon.)
I don’t have a self-diagnosis with a name, instead in my head I go with something like “not totally neurotypical”.
I find several management techniques of actually diagnosed people to be useful for my own life. Let me give two examples: I handle touch better when it is firm; so I told my partner that I needed him to use pressure for hugs or hand holding, as something stronger than just my preference, and he believes in my lived experience so he has been ok with this. (I did have to remind him a lot back when we first started dating, because it is an unusual request, but now it’s normal for us).
Second example is schedules. I don’t do well with change but I do much less well when I don’t even know the change is happening, so I’ve tried to set some structure to my day (an extra challenge in my work-from-home position right now!). It helps.
And the third example is more or less what momus_window said too: I extend extra patience towards myself, especially regarding social situations or other cases where I find things maybe more difficult than the average person.
One last comment, that I am saying as much towards myself as towards you: it is ok to use the coping mechanisms developed for diagnosed nonneurotypicals, as long as they help you and don’t hurt anyone else, regardless of your ability to get diagnosed or even regardless of your having all of the traits required to get a diagnosis. Go ahead and read about experiences of women diagnosed later in life, concentrating on what techniques they have learned to deal, and go ahead and use those techniques now.
posted by nat at 10:52 AM on June 5, 2020 [4 favorites]
I find several management techniques of actually diagnosed people to be useful for my own life. Let me give two examples: I handle touch better when it is firm; so I told my partner that I needed him to use pressure for hugs or hand holding, as something stronger than just my preference, and he believes in my lived experience so he has been ok with this. (I did have to remind him a lot back when we first started dating, because it is an unusual request, but now it’s normal for us).
Second example is schedules. I don’t do well with change but I do much less well when I don’t even know the change is happening, so I’ve tried to set some structure to my day (an extra challenge in my work-from-home position right now!). It helps.
And the third example is more or less what momus_window said too: I extend extra patience towards myself, especially regarding social situations or other cases where I find things maybe more difficult than the average person.
One last comment, that I am saying as much towards myself as towards you: it is ok to use the coping mechanisms developed for diagnosed nonneurotypicals, as long as they help you and don’t hurt anyone else, regardless of your ability to get diagnosed or even regardless of your having all of the traits required to get a diagnosis. Go ahead and read about experiences of women diagnosed later in life, concentrating on what techniques they have learned to deal, and go ahead and use those techniques now.
posted by nat at 10:52 AM on June 5, 2020 [4 favorites]
mid-40s trans woman here who labels herself neuro-divergent, and/or autism adjacent.
overall it’s been difficult for me to pin down what’s happening because i have other things (ADHD, childhood relational trauma, c-PTSD, bipolar-ii) which have significant overlapping symptoms. and, being in my 40’s, i’ve developed a lot of coping mechanisms already. it’s impossible for me to know what’s what.
i tried asking a psychiatrist who said, “oh you can’t be autistic, your emotions aren’t flat.” which is stereotypical garbage. i’ve also tried a few online tests that show me as borderline on the spectrum. none of these tests feel legit to me, though: they ask questions like “do you find yourself fascinated with dates or license plates?” which is tantamount to transgender “tests” like cogiati which ask things like “did you like playing with dolls as a kid?”.
in the absence of anything that gave me confidence as being autistic, i went with neuro-divergent as a label. i’m confident i fit *somewhere* in that umbrella, but i worry about taking up space by labeling myself autistic, so it seemed like a good compromise.
posted by kyliej at 2:42 PM on June 5, 2020 [1 favorite]
overall it’s been difficult for me to pin down what’s happening because i have other things (ADHD, childhood relational trauma, c-PTSD, bipolar-ii) which have significant overlapping symptoms. and, being in my 40’s, i’ve developed a lot of coping mechanisms already. it’s impossible for me to know what’s what.
i tried asking a psychiatrist who said, “oh you can’t be autistic, your emotions aren’t flat.” which is stereotypical garbage. i’ve also tried a few online tests that show me as borderline on the spectrum. none of these tests feel legit to me, though: they ask questions like “do you find yourself fascinated with dates or license plates?” which is tantamount to transgender “tests” like cogiati which ask things like “did you like playing with dolls as a kid?”.
in the absence of anything that gave me confidence as being autistic, i went with neuro-divergent as a label. i’m confident i fit *somewhere* in that umbrella, but i worry about taking up space by labeling myself autistic, so it seemed like a good compromise.
posted by kyliej at 2:42 PM on June 5, 2020 [1 favorite]
I used to wonder about this in a “ha ha only serious” kind of way, and in the last year have started to wonder without the “ha ha” part. I would say my confidence in my self diagnosis is moderate, but that should be normalized against a level of confidence in the entire diagnostic enterprise that’s somewhere south of moderate. I believe this way of thinking about humanity and individual difference will not look the same in 20, 50, 100 years. It’s been diagnostically unstable and my hunch is it will remain so.
I’m still on the fence about the value in this self-dx. In my field there’s an oft-repeated chestnut: all models are wrong, but some are useful. I am not sure what “useful” looks like here, and the downside risks aren’t ones I’m eager to take on without an answer to that. The label doesn’t come with a handbook or a One Weird Trick; figuring out how to operate in a world where I’m not the default setting in some ways is work I had to do anyway, and at this point in my life have basically already done to my satisfaction. The one place I can see potential use is in understanding where I might look to find people who are simpatico (it’s striking to me that this sort of already happened without my being aware of it; more than once I’ve had intense, inexplicable friend crushes on people who turned out to be autistic) and what shortcuts I might learn to use with people who are not. But again, it’s not like I was batting zero there, because I’ve been me for a while now. I’m still learning and thinking about this.
Since I don’t really go talking about my neurological status much under my wallet name, I haven’t needed a label yet. I think the uncomplicated one is “autistic,” though. It seems to be where the relevant activism happens.
posted by eirias at 2:42 PM on June 5, 2020 [4 favorites]
I’m still on the fence about the value in this self-dx. In my field there’s an oft-repeated chestnut: all models are wrong, but some are useful. I am not sure what “useful” looks like here, and the downside risks aren’t ones I’m eager to take on without an answer to that. The label doesn’t come with a handbook or a One Weird Trick; figuring out how to operate in a world where I’m not the default setting in some ways is work I had to do anyway, and at this point in my life have basically already done to my satisfaction. The one place I can see potential use is in understanding where I might look to find people who are simpatico (it’s striking to me that this sort of already happened without my being aware of it; more than once I’ve had intense, inexplicable friend crushes on people who turned out to be autistic) and what shortcuts I might learn to use with people who are not. But again, it’s not like I was batting zero there, because I’ve been me for a while now. I’m still learning and thinking about this.
Since I don’t really go talking about my neurological status much under my wallet name, I haven’t needed a label yet. I think the uncomplicated one is “autistic,” though. It seems to be where the relevant activism happens.
posted by eirias at 2:42 PM on June 5, 2020 [4 favorites]
I read an article here on metafilter about the ways in which woman on the spectrum have crafted masks to “blend in” and the specifics struck a chord. I started to read more about autism in women and then discussed it with my therapist. She said she had thought it might be the case based on my continuous social issues and sent me to have an official diagnosis. Considering I was officially diagnosed as high-functioning autistic I guess I was accurate.
posted by Young Kullervo at 5:25 PM on June 5, 2020 [1 favorite]
posted by Young Kullervo at 5:25 PM on June 5, 2020 [1 favorite]
I guess my point is if you do your research and think you might be, you probably are.
posted by Young Kullervo at 5:28 PM on June 5, 2020 [2 favorites]
posted by Young Kullervo at 5:28 PM on June 5, 2020 [2 favorites]
I'm in the same place as you (30 year old woman, taking tests, researching, I've taken the tests you've listed and I have fallen in the non-neurotypical category in all of them, which felt inevitable) and I think it has been beneficial and a transformative way of thinking about my behaviors and dealing with past trauma.
So here is my long wall of text:
I didn't come up with the idea I may be on the spectrum myself. I had read and mentioned these articles about autism in women and masking that we are all referencing to my wife, a long time ago when she was obtaining her ADHD diagnosis (thought she'd find it relevant to her experience as a woman with ADHD). Eventually (in the past year) she made the connection from, ya know, living with me for 10 years. I guess instead of self-diagnosed, I was spouse-diagnosed. It was something that I was considering, that was in the back of my mind. Then Nicole Cliffe said something in her newsletter. She is autistic and described some of the internal experiences and feelings she had and I started crying because it hurt how much I related to it. Then I started taking my wife's gentle suggestion very seriously.
Self-diagnosis has led to self-acceptance of behaviors, feelings, and sensitivities that have been mocked, criticized, bullied out of me by family, peers, and teachers my whole life. Every time I read about abehavior that I have that is considered 'autistic', I'll have memories of doing that as a child (but even more so before I learned to hide it) or it was a problem when I was a child (so I learned to hide it). I also have traumas from growing up with benevolently neglectful alcoholics as parents. I can only describe it as grief for this child I was; so scared, experiencing the world in a way no one wanted me to, that didn't mesh with anyone else, that was alone all the time, struggled in so many ways, yet no one at home or school thought to get me tested for anything, ever. And now instead of always excusing my childhood trauma because I love my parents and they never beat me or anything, I am better able to confront it. I was really different and really struggled and I was ignored by all the adults that were supposed to help me! I should be mad about that and stop excusing them!
That realization has also led to something just as important which is that I'm slowly able to... relax. Instead of policing the way I behave around other people CONSTANTLY, I'm trying to just... do what feels good and right instead of stopping myself at some line I've decided means people won't dislike me. The "I can be this weird, and no weirder" line. I'm doing away with the line, slowly but surely, because I'm not a bad person or an embarrassing person or unworthy of feeling comfortable as I exist in this world, I'm just autistic. Even typing it feels pretty freeing, even though I don't really claim the label outside of my marriage, because of that insecurity without formal diagnosis. It's the only way I'd ever tell my family (to them I'm just being paranoid, wish I was special, "something about children being over-medicated", "no way you could be autistic you have emotions and make jokes and are bad a math"), since it's taken almost 15 years for them to really accept that anxiety and depression can have real material affects on my life, and my dad still suggests I need to eat more whole foods to solve it. ANYWAY.
tl;dr: self-diagnosis was beneficial for me because it reframed how I concieved of my childhood traumas and has enabled me to better let go of masking and self-policing that make life hard and uncomfortable.
posted by wellifyouinsist at 6:32 PM on June 5, 2020 [4 favorites]
So here is my long wall of text:
I didn't come up with the idea I may be on the spectrum myself. I had read and mentioned these articles about autism in women and masking that we are all referencing to my wife, a long time ago when she was obtaining her ADHD diagnosis (thought she'd find it relevant to her experience as a woman with ADHD). Eventually (in the past year) she made the connection from, ya know, living with me for 10 years. I guess instead of self-diagnosed, I was spouse-diagnosed. It was something that I was considering, that was in the back of my mind. Then Nicole Cliffe said something in her newsletter. She is autistic and described some of the internal experiences and feelings she had and I started crying because it hurt how much I related to it. Then I started taking my wife's gentle suggestion very seriously.
Self-diagnosis has led to self-acceptance of behaviors, feelings, and sensitivities that have been mocked, criticized, bullied out of me by family, peers, and teachers my whole life. Every time I read about abehavior that I have that is considered 'autistic', I'll have memories of doing that as a child (but even more so before I learned to hide it) or it was a problem when I was a child (so I learned to hide it). I also have traumas from growing up with benevolently neglectful alcoholics as parents. I can only describe it as grief for this child I was; so scared, experiencing the world in a way no one wanted me to, that didn't mesh with anyone else, that was alone all the time, struggled in so many ways, yet no one at home or school thought to get me tested for anything, ever. And now instead of always excusing my childhood trauma because I love my parents and they never beat me or anything, I am better able to confront it. I was really different and really struggled and I was ignored by all the adults that were supposed to help me! I should be mad about that and stop excusing them!
That realization has also led to something just as important which is that I'm slowly able to... relax. Instead of policing the way I behave around other people CONSTANTLY, I'm trying to just... do what feels good and right instead of stopping myself at some line I've decided means people won't dislike me. The "I can be this weird, and no weirder" line. I'm doing away with the line, slowly but surely, because I'm not a bad person or an embarrassing person or unworthy of feeling comfortable as I exist in this world, I'm just autistic. Even typing it feels pretty freeing, even though I don't really claim the label outside of my marriage, because of that insecurity without formal diagnosis. It's the only way I'd ever tell my family (to them I'm just being paranoid, wish I was special, "something about children being over-medicated", "no way you could be autistic you have emotions and make jokes and are bad a math"), since it's taken almost 15 years for them to really accept that anxiety and depression can have real material affects on my life, and my dad still suggests I need to eat more whole foods to solve it. ANYWAY.
tl;dr: self-diagnosis was beneficial for me because it reframed how I concieved of my childhood traumas and has enabled me to better let go of masking and self-policing that make life hard and uncomfortable.
posted by wellifyouinsist at 6:32 PM on June 5, 2020 [4 favorites]
When you take the assessment quiz don’t answer with what you can but what you prefer. I can socialise and make eye contact etc etc but I don’t like doing it and find it exhausting. Answering with what I can do through years of socialisation surviving, I score normal. Answering with what I actually prefer I score in the high 30s.
posted by dorothyisunderwood at 9:18 PM on June 5, 2020 [7 favorites]
posted by dorothyisunderwood at 9:18 PM on June 5, 2020 [7 favorites]
they ask questions like “do you find yourself fascinated with dates or license plates?” which is tantamount to transgender “tests” like cogiati which ask things like “did you like playing with dolls as a kid?”
100% agree with this, and given that it's apparently very common for trans people to be autistic and vice versa, it's always amused me that as trans people we get plenty of practice figuring out what the "right" answers are to dodgy diagnostic questions :D
In terms of self-diagnosing, I think of myself as Probably Autistic, and so far I haven't felt the need to pay for a formal diagnosis. I wouldn't rule it out altogether though; I think the cost/benefit calculations for that will probably change several times over the course of my lifetime, depending what circumstances I find myself in. For now I'm happy to be self-diagnosed though.
posted by Mauve at 12:12 AM on June 6, 2020 [2 favorites]
100% agree with this, and given that it's apparently very common for trans people to be autistic and vice versa, it's always amused me that as trans people we get plenty of practice figuring out what the "right" answers are to dodgy diagnostic questions :D
In terms of self-diagnosing, I think of myself as Probably Autistic, and so far I haven't felt the need to pay for a formal diagnosis. I wouldn't rule it out altogether though; I think the cost/benefit calculations for that will probably change several times over the course of my lifetime, depending what circumstances I find myself in. For now I'm happy to be self-diagnosed though.
posted by Mauve at 12:12 AM on June 6, 2020 [2 favorites]
50+ woman, similar story, but with ADHD. (A slide along the curve from autism, but in that general family, along with Tourette's and OCD.)
Saw a thing go by on the web with a number of items that said, "if any of these ring a bell, please consider investigating ADHD" and all of them were, as they say, "it me". So I did. And all the stuff I read and discovered kept ringing more bells - so much fit or explained me.
I did eventually seek diagnosis, but I am right there with you on "well this all seems very familiar and much like I experience life, and omg this thing is a thing too? Other people do this??, but .. maybe I'm wrong and retconning or just quirky or just... xyz". I gather it's extremely common to second-guess oneself in this situation.
Depends what you want out of it really. I wanted - a) reassurance that this really was a thing that really affected me, and I wasn't just somehow making it up, and b) if confirmed, to try medication. b) was the only thing I *needed* the diagnosis for, though.
If the descriptions and anecdotes and research etc all speak to you and make you feel like this is a thing you have, then trust yourself. Mostly, if you find reassurance or comfort or useful strategies from others with the condition, that's all that matters.
I think women in particular are trained to think that if we have quirks or odd needs or nonstandard reactions or think differently or struggle with things - we are BAD and WRONG and should DO BETTER and BUCK UP and so on. So if we find something that suggests that the things we struggle with are not our fault, just different wiring that requires a different approach - we tend to doubt, and feel like that's an 'easy excuse'. It isn't. I am here to tell you - it is not. It's a rational response to: the set of problems I have, is not the set I (and everyone) thought I was issued. Here are my alternate solutions.
If your life is better/easier/makes more sense to you when you behave as though you believe it, then behave that way and smooth out your path :)
posted by Ilira at 3:31 AM on June 6, 2020 [2 favorites]
Saw a thing go by on the web with a number of items that said, "if any of these ring a bell, please consider investigating ADHD" and all of them were, as they say, "it me". So I did. And all the stuff I read and discovered kept ringing more bells - so much fit or explained me.
I did eventually seek diagnosis, but I am right there with you on "well this all seems very familiar and much like I experience life, and omg this thing is a thing too? Other people do this??, but .. maybe I'm wrong and retconning or just quirky or just... xyz". I gather it's extremely common to second-guess oneself in this situation.
Depends what you want out of it really. I wanted - a) reassurance that this really was a thing that really affected me, and I wasn't just somehow making it up, and b) if confirmed, to try medication. b) was the only thing I *needed* the diagnosis for, though.
If the descriptions and anecdotes and research etc all speak to you and make you feel like this is a thing you have, then trust yourself. Mostly, if you find reassurance or comfort or useful strategies from others with the condition, that's all that matters.
I think women in particular are trained to think that if we have quirks or odd needs or nonstandard reactions or think differently or struggle with things - we are BAD and WRONG and should DO BETTER and BUCK UP and so on. So if we find something that suggests that the things we struggle with are not our fault, just different wiring that requires a different approach - we tend to doubt, and feel like that's an 'easy excuse'. It isn't. I am here to tell you - it is not. It's a rational response to: the set of problems I have, is not the set I (and everyone) thought I was issued. Here are my alternate solutions.
If your life is better/easier/makes more sense to you when you behave as though you believe it, then behave that way and smooth out your path :)
posted by Ilira at 3:31 AM on June 6, 2020 [2 favorites]
For some time i thought about getting a diagnosis (for adhd, but i think my advice could go for other behavioral things" because then i would be "validated" but i relebtes fot the following reasons:
1. Expense in time and frustration to get dxed
2. Im not interested in rx meds right now
3. Im not interested in anybaort of work accomodation or other "perks" available with a diagnosis.
I realized that for where i am right now in my life, i don't need to dwell on labeling myself. Its ok for me to use advice aimed at adhd populations without having a diagnosis myself. Its also ok for me to be a little more attentive to early signs in my young children even if i dont have a dx myself.
Basically, you dont need to worry about carrying a dx, either official or diy, to use the coping tools youve discovered for people with that dx.
posted by WeekendJen at 12:37 PM on June 7, 2020 [1 favorite]
1. Expense in time and frustration to get dxed
2. Im not interested in rx meds right now
3. Im not interested in anybaort of work accomodation or other "perks" available with a diagnosis.
I realized that for where i am right now in my life, i don't need to dwell on labeling myself. Its ok for me to use advice aimed at adhd populations without having a diagnosis myself. Its also ok for me to be a little more attentive to early signs in my young children even if i dont have a dx myself.
Basically, you dont need to worry about carrying a dx, either official or diy, to use the coping tools youve discovered for people with that dx.
posted by WeekendJen at 12:37 PM on June 7, 2020 [1 favorite]
This thread is closed to new comments.
I don't really care if my self-diagnosis is formally correct, I care that it helps me. I generally cope well, but autism explains some stuff that just didn't make sense to me / seemed easy to other people but was hard for me, like having to learn how to social interaction by rote. I was motivated to learn more when I started having a long driving commute in traffic that was causing me to be hypersensitive to noises and touch in the rest of my life and needed better strategies to cope / validation that it was okay to set the boundaries I needed and I wasn't just being a wimp. I also found out that my struggles with gender were possibly related to being on the spectrum, which was a helpful perspective for me. Basically, it makes it easier to have some self-compassion and understand what's happening when social interactions just don't gel sometimes.
posted by momus_window at 9:49 AM on June 5, 2020 [6 favorites]