There's no false valour in Autism
January 13, 2023 1:01 AM   Subscribe

I recently realised that I'm autistic. Here are the resources I found valuable in figuring out what this means. All of these links are about autism in adults, which can be a challenge to find. Where possible I've prioritised resources created by neurodivergent people. Reasons why autistic people self diagnose The medical system has long focused on young, white boys — at that, often cisgender, heterosexual, and from families with money — who exhibit very specific autistic traits when it comes to research, diagnosis, and accommodations. This excludes everyone else, and means the most prevalent information we have only helps part of the community. As a result, the more intersections of oppression an autistic person exists are, the more difficult it can be for them to get a professional diagnosis.

Why it's nonsense to say that everyone's a little bit autistic
(This article has previously been shared on metafilter by aniola but it's so good I thought it worth repeating.)

Self Diagnosis: but isn't it harmful?
Self diagnosis is not a uniformed, spontaneous decision. It is not done without thoroughly educating oneself first.

Why it's helpful to know whether or not you are autistic
Instead of looking over strengths and challenges and feeling strange or different from others but not knowing why, they gain a system for understanding certain patterns of feeling and responding.

Adult autistic people are frequently misdiagnosed as having mental health conditions before they're diagnosed as autistic
This post is about the hundreds and thousands of autistic people who are misdiagnosed everyday by psychiatrists, psychologists, and other professionals.

How to deal with autistic imposter syndrome
Many of us who are autistic have had that sinking feeling that we may have been faking autism in some way, misappropriating a diagnosis that we do not deserve or fearing we have been misdiagnosed.

Thin Slicing: Autistic people and first impressions
Thin slice judgements are those first-impressions that people make that continue to define and influence how a person feels about someone. Reaearch has shown that these judgements are disproportionately negative for autistic people and that non-autistic people have an instant dislike of them.

Autistic Masking
Masking is a social skill that persons with autism adopt in social settings in which non-autistic people expect non-autistic behavior. Examples include faking eye contact, mirroring, minimizing, and disguising behaviors and feelings. Autism masking has been documented to cause stress, depression, and other mental health and identity issues.

Double empathy problem: miscommunication is a two way street

Autism, interoception and alexithymia
Many of the stereotypical assumptions about autism (for example, that we struggle with empathy, theory of mind, emotional identification, and reciprocity) are actually better explained by alexithymia and are not intrinsic to autism itself. Today’s article will provide an overview of the Autism-Alexithymia overlap and then talk about the differences between autism and alexithymia. First, let’s dive into the overlap.

Strategies for improving poor interoception
To put it simply: a person can not consistently self-regulate when their interoception system is dysregulated. As a Psychologist, I learned so many “emotional regulation strategies” that often seem misattuned to my neurodivergent clients. It wasn’t until I learned what interoception is that I began to connect the dots. Many of the emotional regulation strategies that I had learned do not effectively work when there are underlying interoception issues. For this reason, it’s important to consider interoceptive awareness as part of any therapeutic work.

How to tell the difference between social anxiety and autism

Neurodivergent insights on the overlap between social anxiety and autism

Managing the kind of social anxiety that autistic people can have

Demand Avoidance,
Autistic people may avoid demands or situations that trigger anxiety or sensory overload, disrupt routines, involve transitioning from one activity to another, and activities/events that they don’t see the point of or have any interest in.

Persistant Drive for Autonomy, an alternative view of Pathological Demand Avoidance.
The core of PDA is an anxiety-driven need for autonomy. PDA causes someone to avoid demands and expectations for the sole purpose of remaining in control. When faced with a demand (even a really minor one), PDAers can have extreme reactions.

Rejection Sensitivity Dysphoria in Autism and ADHD
Rejection Sensitive Dysphoria, or RSD for short, is a common issue experienced by Neurodivergent (ND) people. It is thought to be caused by increased difficulty in regulating our emotions, which leads to an incredibly heightened experience of rejection.

Echolalia and other echo phenomena from the point of view of an autistic person

Stimming. What it is, and why it's important and beneficial

How autism may affect sympathy and empathy
Research into the link between autism, empathy, and sympathy has evolved over the past 40 years. Initially, it was believed that a lack of empathy and sympathy was a universal trait of autism, but more recent research indicates that this varies among individuals with the condition.

The questions of whether people with autism truly empathize or sympathize with others, what stands in the way of a traditional response, whether this can be taught, and whether an apparent lack of empathy or sympathy really reflects a lack of emotional connectedness are more nuanced than early research suggests


Autistic and ADHD nervous system and stress response: increasing the window of tolerance

Hyper and hypo sensitivity to the 8 sensory systems

Autism and differences in stress responses, the sympathetic nervous system

Music and the Vagus Nerve
The vagus nerve is in close proximity to the ear, through which we hear sound and music. When we listen to music, the vibrations of the sound resonate in the eardrums before traveling through the vagus nerve. Since the vagus nerve is associated with important physical functions like heart rate, taste, swallowing, and digestion, it’s closely related to the “rest and digest” PNS. When the vagus nerve is activated, it stimulates the PNS and sends a signal that it’s time to relax.

Vision and hearing challenges with vestibular disorders
Interestingly, some patients with a vestibular disorder may also experience photosensitivity (discomfort with bright light) and other vision problems such as: intense discomfort with flickering lights, particularly fluorescent, sodium, or mercury vapor lights, moving objects, rows of similar objects, such as in grocery store aisles or lines of text on a page, or busy, high contrast patterns, such as polka dots or sunlight filtering through mini-blinds. Environments with a combination of fluorescent lighting and busy patterns or moving objects are especially problematic, which is why shopping in large stores may be very difficult. Even environments with subdued décor can be fatiguing if frequent head movements are required. Sometimes these symptoms of visual super-sensitivity are related to an unrecognized migraine disorder1, and treatment aimed at migraine prevention may be effective. Other times, an abnormal vestibular system and migraine are the coupled culprits.

The benefits of autistic special interest
But it’s only in the past decade or so that autism professionals have begun to recognize the value of these intense interests that emerge in early childhood. Clinicians have historically called them circumscribed interests, and they belong to the category of diagnostic criteria for autism called “restricted, repetitive patterns of behavior, interests or activities,” which also includes movements such as hand-flapping and an insistence on rigid routines. A distinguishing aspect of special interests is their intensity: They can be so absorbing that they are the only thing the person wants to do or talk about.

Video on the differences and overlaps between autism and ptsd

Autism and PTSD
Given the high rate of co-occurrence, it is more likely that missed diagnosis happens (vs. misdiagnosis). A missed diagnosis happens when a person’s PTSD is accurately diagnosed while their underlying neurotype (autism) remains missed. When they do co-occur this creates some additional complexity in the clinical presentation.

Neurodivergent Woman podcast: Alexithymia and Interoception

Neurodivergent Woman podcast: Trauma

Neurodivergent Woman podcast: Pathological Demand Avoidance

Neurodivergent Woman podcast: Repetitive Behaviours

Neurodivergent Woman podcast: Neurodivergence and Therapy

Neurodivergent Woman podcast: Overlap between Autism and ADHD

Neurodivergent Woman podcast: Executive Functioning

The title of this post is in response to the unfortunate recent increase in people challenging autistic self diagnosis.
posted by Zumbador (84 comments total) 217 users marked this as a favorite
 
Thank you so much for putting this together, this looks like a great batch of links I can refer a lot of people to. :)

This is probably in one of the above links, but one thing that everyone (allistic especially) need to realize is that an official medical diagnosis of autism can and does block people from visas or immigration to many countries. Autism is wildly stigmatized (and I've done this myself, on this website, in the past; a lot of ableism I've had to face up to and work through).

I know I've made longer comments in other autism threads, but for me, reading about alexithymia/interoception and masking is what finally kinda blew the doors open for me and let me engage with other aspects of my autism in a more welcoming way; it became less about, "Oh gods, what's wrong with me, why have I always been such a broken person," to, "Huh, well that explains THIS thing about me pretty well.." It became a toolbox. The self-discovery process was EXTREMELY rough - I did not have an autism-informed therapist - so I was working through a lot of it myself, reading journal articles, figuring out what my kind of autism looked like, and not what the DSM thought I should be.

I'm probably the most functional I've ever been in my life. I don't keep beating my head against a wall, trying to figure out how to socialize, work, and live, white-knuckling through the day. I use different strategies that work for my brain, and I finally feel like a whole person.

There's a lot to recommend seeking out a professional diagnosis for many people, but I feel pretty comfortable with where I am and probably won't ever do that; it doesn't get me anything (except outside validation which.. is certainly something I struggle with). Whether or not I "really" have autism isn't important, because living my life as if I do have autism, and adjusting how I interact with society and the world that way, has been so much better for me.
posted by curious nu at 1:35 AM on January 13 [33 favorites]


Yes finding out about the alexithymia and poor Interoception aspects were really life altering as well.

I'm gobsmacked that there isn't more education about this. Even early-diagnosed autistic people often don't seem to be informed about how to manage poor interoception and alexithymia.

So important for self regulation.
posted by Zumbador at 1:48 AM on January 13 [1 favorite]


Thin slice judgements are those first-impressions that people make that continue to define and influence how a person feels about someone. Reaearch has shown that these judgements are disproportionately negative for autistic people and that non-autistic people have an instant dislike of them.

Well that would explain a fuck of a lot. My entire life has been one of being utterly perplexed by why so many people seem to treat me so much worse than everyone else.
posted by Dysk at 2:11 AM on January 13 [32 favorites]


Thank you so much for this post! I self-diagnosed my ADHD and then got it confirmed formally for reasons. There is a lot of overlap between ADHD and a bunch of behaviors/traits/tendencies and common co-existing conditions that I didn't know about for years and years. Finally, in my late 50s, I took a multi-week class at Kaiser on living with adult ADHD.

My mind was blown. So many things that I thought were just me being weird turned out to be common for folks with the same diagnosis. Please note: I am not trying to hijack this thread about autism. I am acknowledging that the situation sucks for many neurodiverse folks and this post is a vital educational community service. Zumbador, you rock!
posted by Bella Donna at 2:18 AM on January 13 [20 favorites]


I suppose with every other way the NHS is collapsing it's not surprising, but having just gotten off the phone with my doctor, it appears there is no record of my referral for assessment two years ago, or the one three years before that. So that's five years old if waiting, and I might not even be in the queue yet, as it were. Fun.
posted by Dysk at 2:25 AM on January 13 [7 favorites]


Such an excellent thread! I am writing to follow up since I did an Ask Mefi about seeking an autism diagnosis several months ago: -- I just completed my neuropsychological assessment and it was a very positive experience, and I'm glad I didn't let unverified fearmongering get in the way of me seeking out what is best for my needs. I also really needed to get one to see an overall picture of my brain, since I also received a mild concussion a decade ago, and have always had some issues since I was a child, and I really just wanted to have some idea of what was going on.

Granted, I am doing it in a college town where several graduate students probably get a neuropsychology assessment for ADHD/autism (I already have an ADHD diagnosis) and so the doctor was already very familiar with the needs of our particular population, but I decided that I didn't want to fear not being able to immigrate or get visas to other countries at the cost of me being able to get support and livelihood now in the United States, especially because I am located in California. I also figured I'll hide my records if needed, since they can't get it without a consent of release form anyway.

@Bella Donna: ADHD and autism have so much overlap that there are some arguments being made now that they are actually very similar and on the same spectrum of neurodivergence. I haven't looked into it that deeply, but I would not be surprised.
posted by yueliang at 2:34 AM on January 13 [9 favorites]


Please note: I am not trying to hijack this thread about autism

@belladonna not at all please discuss ADHD or any other form of neurodivergence in this thread.
posted by Zumbador at 2:57 AM on January 13 [9 favorites]


Thank you so much for this post. AuADHD here.
I recently learned about the concept of Monotropism and am finding that this framework has a lot of explanatory power for me for both my autism and ADHD. Perhaps others may find value as well.

The video here is what really got me interested.

Monotropism.org
Monotropism: An Interest-Based Account of Autism
Monotropism - In Practice: this link has a ton of excellent resources.
Revisiting monotropism over at Autistic Scholar.
posted by lazaruslong at 3:12 AM on January 13 [12 favorites]


This is great! I'm a 49-year-old black man, and I was just diagnosed this last year. This process has been a hell of an eye-opener. Everything said up top about the way that autism is perceived as being the province of white children is so true. I'm currently looking for therapists to deal with other issues but most in my area don't deal with adult autism.

Fortunately, I deal with frustration really well, so this hasn't been a problem. /s
posted by anansi at 3:26 AM on January 13 [36 favorites]


Thanks for this, as a child I was diagnosed as dyslexia, which recently I've discovered can be a trait of autism. I've not been formally diagnosed as autistic, but fairly certain I am. Anxiety for me is challenging. Talking to a therapist has been helpful.
posted by ben30 at 4:09 AM on January 13 [2 favorites]


re: autism/ADHD overlap: yeah! I remember reading research articles back 10-15 years ago about how they may be different expressions of the same root. I don't have ADHD so I haven't followed up on that as much but I think it's a pretty good topic. :)

We can also talk about autigender :D Once you recognize autism in yourself, you see how it impacts/informs/influences a lot of how you interact with the world.

I came across this paper - "Name recognition in autism: EEG evidence of altered patterns of brain activity and connectivity" awhile back and almost every autistic trans person I know that I've shared it with has had a similar "WHAT" moment. Small study, but the common (but not required!) trans experience of choosing a new name seems to be different for autistic folks. We often don't have that feeling of, "Yes, this is my name, this is perfect." Often it's more like, "Well.. this.. works. Sure. This is fine. This gets me what I want."

Another thing (non-gender-related) that's interesting to explore is aphantasia, inability to visualize things, especially new/unfamiliar things. Both aphantasia and its opposite seem to be more common in autistic people. One of Temple Grandin's books (who.. I don't always love how she writes, I think she seems stuck on an older "all autistic people are THIS way" conception, but I may've been reading older works) discusses MRIs of autistic brains and how there are often a lack of connections in one part of the brain, and then almost a kind of overcompensation in another. Hyper- or hypo-lexicality is also common, as is speaking loudly/at length versus struggling to get words out at all. We don't seem to have a lot of middle gears, so to speak.
posted by curious nu at 4:13 AM on January 13 [11 favorites]


Welp there goes my afternoon. Thanks!
posted by Captain_Science at 4:53 AM on January 13 [3 favorites]


Small study, but the common (but not required!) trans experience of choosing a new name seems to be different for autistic folks. We often don't have that feeling of, "Yes, this is my name, this is perfect." Often it's more like, "Well.. this.. works. Sure. This is fine. This gets me what I want."

I wonder to what extent this attitude is more common among neurodivergent trans people. I hate the term "dead name", particularly when used by cis people, basically precisely because changing my name was a matter of expediency. It's like "I gave up my name for you people, you don't get to call it 'dead'." (And, of course, that attachment to my name is an interesting twist on the whole self-name thing.)
posted by hoyland at 7:09 AM on January 13 [14 favorites]


HOLY SMOKES, this is a deep dive. Already bookmarked because I know I’ll be coming back to this post a lot. Many thanks for this labor of love!
posted by eirias at 7:33 AM on January 13 [2 favorites]


Adult autistic people are frequently misdiagnosed as having mental health conditions before they're diagnosed as autistic.

This is me! I have a diagnosis of bipolar disorder that is clearly incorrect (it's been six years since I took any kind of mood stabilising medication and I've had zero episodes in either direction in that time, which I gather is rare for folks who actually have bipolar). I got diagnosed in less than an hour - and, here's the kicker, can't get undiagnosed via the NHS at all because I'm not in crisis and they don't have the resources. Their only suggestion for how to rectify this thing that I've literally been denied life insurance over was to seek out a private psychiatrist, at a cost of around £1000 of my own pounds, and get them to un-diagnose me.

Autism + C-PTSD explains how I am the way I am (and why I suffered the way I did from childhood until my late 20s) far better than a mood disorder, even though the outcome of having those things, not realising I had them, and receiving no meanigful support for most of my life certainly looked and like a severe mood disorder to the professionals I was working with at the time, and felt like one to me too.

Right now I have no interest in spending another £1000 or so of my own pounds to get a formal autism diagnosis. I'm sure I've said this here before, but I'm constantly struck by the parallels between the trans and the neurodivergent experience when it comes to diagnosis, because both of those things more or less force you to be assessed by someone who probably isn't a member of your community and is probably basing a lot of their knowledge of your community and whether you fit into it on narrow, incomplete, harmful and outdated stereotypes. I straight up don't understand why my own lived experience isn't enough to go on, when that experience is probably more accurate than the diagnostic process. (Plus, autism - I love to accurately sort and categorise stuff and I'm generally very good at it.) It's not like there are any services at all that a diagnosis would give me access to, and a diagnosis might also make it harder for me to seek gender-affirming care, so everyone will just have to take my word for it.

Realising I was both trans and autistic, and allowing myself to live more authentically within those identities and forgive myself for not being neurotypical and give myself a break when stuff is hard sometimes has been far more valuable than most of the mental health care I sought out before I came to those realisations. One of my best friends (incidentally AuDHD, what we could have done with that knowledge if we'd had it when we were kids...), who's known me since I was 12, said the other day that she's really enjoyed seeing me become the most myself over the past few years, and that my house feels super comfy to hang out at because I'm so chill about who I am these days, and it was so nice to hear. I grew up in a house of cold pointy spotlessly-clean repression, where being who I was just made me a target for a parent whose standards I could never, ever meet, and I've gotta say I love not living like that any more.
posted by terretu at 8:11 AM on January 13 [19 favorites]


A lot of this resonates with me. I developed echolalia as a child, silently repeating the things I said after I said them. This was shortly after I was moved from a hippie elementary school to one with uniforms and etc. because of disruptive behavior. I also developed some kind of blinking anxiety thing. I was evaluated for 'hyperactivity' at the time, but didn't have the neurological signs they were looking for then. Talk therapy helped enough that those behaviors went away, but I still find myself auditing the things I say internally and rehearsing past interactions mentally, some for a long time after.

Later on after more turbulence with school (and to some degree social life) I was diagnosed with ADD (and dysthymia), but it has never felt like that really explained all my issues, or addressed my full experience. Like with interoception.

I strongly suspect my diagnosis is incomplete, and really need to do something about getting re-evaluated. I've let myself get stuck on finding someone taking patients for continuing therapy, which turns into maze of stale insurance company rosters, but maybe I should separate those things.
posted by snuffleupagus at 8:28 AM on January 13 [4 favorites]


I'm sure I've said this here before, but I'm constantly struck by the parallels between the trans and the neurodivergent experience when it comes to diagnosis, because both of those things more or less force you to be assessed by someone who probably isn't a member of your community and is probably basing a lot of their knowledge of your community and whether you fit into it on narrow, incomplete, harmful and outdated stereotypes. I straight up don't understand why my own lived experience isn't enough to go on, when that experience is probably more accurate than the diagnostic process.

Absolutely exactly and precisely.

I also think that the prevalence of autistic imposter syndrome is largely as a result of this diagnostic process which doesn't acknowledge its own subjectivity, and the sheer weirdness of having to present oneself to be examined for a list of traits you're very much aware of.

How many posts have I seen by diagnosed autistic people saying "I'm not sure if I'm really autistic, maybe I exaggerated my traits, or maybe I'm faking without realising it."
posted by Zumbador at 8:29 AM on January 13 [12 favorites]


Also, my immediate family (which is only two other people plus me these days) all took the RAADS autism assessment for shits and giggles the other day, and, well, heck, we're all neurospicy.

Even my sister, who I think of as pretty much neurotypical compared to me & our mother, scored just under 100. I was very surprised to get a higher score than my mother, who I've always thought of as more autistic than me - but she didn't get anywhere near as much shitty feedback that basically forced her to mask her entire self growing up compared to me (her differences easily read as 'shy catholic schoolgirl' in the 1960s, whereas mine read as 'loud and very obviously weird' in ways that made me a target for aggressive self-improvement feedback from pretty much all the adults in my life in the 90s), so she's perhaps a bit less autistic but she also masks her autism a lot less than I've been accustomed to doing for most of my life.

My mother's social relatedness issues came out higher than mine, which makes sense (I'm a lot more social and have always wanted/needed friends a lot more than her; as a friendless kid who was sad about that fact she would tell me not to worry because friends were more trouble than they were worth, which...didn't help...in ways that she wasn't capable of noticing or realising...because autism). I still think she has way worse theory of mind/actual understanding of sonder than I do, in a way that can come across as passively (rather than grandiosely) narcissistic. I do sometimes wonder how I'd have turned out if I'd grown up in a much less abusive context, and sometimes worry that the things that have actually turned out well in terms of my overall personality and ability to relate to other people are in some ways byproducts of abuse. I think if I'd been raised in a way designed to better accept me as I was and build my self esteem, I'd perhaps be a slightly less warm & relatable adult. Not a bad outcome, where I've landed, but the methods and collateral damage were terrible.

It turns out I have the worst sensory issues of anyone in my family by a long way; it's better for me not to think about how much discomfort and how many meltdowns I might have avoided if I'd known that about myself before my mid-20s. I also came out a bit higher on special interests. We all got comparatively low scores on language-related stuff, which I found very interesting because struggling with extremely literal interpretations of idiomatic language is probably the common autistic trait that I find the least relatable. I still misunderstand things a lot, and so does my mother (to the extent that my partner and I sometimes describe the process as [mother's name] syndrome). If you say a normal sentence with several possible meanings, my mother and I will inevitably latch on to the least plausible option. But I find stuff like not understanding commonly-used idioms like raining cats & dogs hard to relate to, because for some reason there's a rubric in my brain already that knows those types of expressions aren't intended to be literal, and for some reason it's never confusing for me. I do have hella mirror neuron issues though, and certain words, phrases or scenes on TV make me super uncomfortable because as soon as I process that sensory input, my body starts to feel the thing to an unpleasant degree (most often around suspense, violence/injury and body horror).

All of which is a long-winded, personal-anecdote-heavy (hi, I'm autistic!) way of reinforcing the idea that if you've met one autistic person, you've met one autistic person. I love that there's so much diversity in the community - that we can have obvious differences from neurotypical folks that are also obviously different from the obvious differences of other autistic folks, for instance.

(And thank you Zumbador for putting this megapost together! I meant to say that in my previous comment but I guess my brain didn't organise my thoughts real good, which...ok I'll stop now.)
posted by terretu at 8:30 AM on January 13 [18 favorites]


One of my best friends teaches autistic children. She would love this. It would be nice if I could send her a link she could read on her phone where mustard text on a navy blue background just doesn't cut it for her. How many of you here read MetaFilter on your phone in plain white like me rather than the accursed yellow on blue?
posted by y2karl at 9:03 AM on January 13 [3 favorites]


After wondering about it for years, I have finally self-diagnosed. In the past few years I read as much as I could about autism, did the online assessments I knew about (I hadn't found out about the RAADS or CAT-Q yet) and even made up a questionnaire I sent to friends to let me compare their traits to mine so that I could see if I was an outlier, comparatively, in 'autistic-y' traits. It wasn't until I downloaded TikTok and it began to feed me reams of content from recently diagnosed (some self-diagnosed, some not) adults - that I realized that autistic people are my people. They are my home. I couldn't relate to their experiences as much as I do and not be one of them. And so that pretty much settles it for me.

Self-diagnosis has given me a profound sense of peace. I can't say that the lifelong sense that I am somehow 'wrong' or 'broken' is gone, but it's so much more muted now. I thought of myself primarily as a high-functioning mentally ill person until now. I'm diagnosed bipolar, with generalized anxiety and social anxiety disorder. Pop-psychology told me I was a socially anxious, insecurely attached introvert. That's not a very flattering portrait, is it? I've been able to reframe everything that's always felt so different about me as "normal, amongst my kind of people". The micro-rejections I experience - I reframe them as "this neurotypical person finds me strange and off-putting, but that doesn't matter much because I don't want their friendship or find them interesting anyhow."

The missing piece now is getting people I care about to accept my self-diagnosis. I can tell they are uncomfortable with it, but we are all in our 40's and we grew up with the idea that autistic people are non-verbal, disturbed, non-functional. It's pretty awful, but that's all we knew. The irony is - these friends of mine are probably autistic too. They'll come to realize it in their own time.

Just a note about my bipolar diagnosis - in my case, I have no doubt it's accurate. I've had two manias that had to be stopped via medical intervention (one in the psych ward). I know the hallmark feelings of grandiosity and exhilaration, the cognitive fry, the thrill-seeking and inappropriate social behavior, the inability to sleep more than three hours a night. I had begun to suspect there was some kind of link between autism and bipolar, but after reading the link above about misdiagnosis I've changed my mind. I am so shocked and saddened that medical professionals are carelessly slapping this diagnosis onto (mostly) women.

Thanks for this wonderful post!
posted by kitcat at 9:15 AM on January 13 [11 favorites]


There's so much good stuff in here that I'm excited to dig into later, but I wanted to say I really appreciate the comments on alexithymia and interoception being important pieces for people. I'm working on developing a "crash course" for autistic people newly diagnosed by my clinic, but there's just so MUCH information I could include that I'm struggling with where to start and end. If anyone has further insight on which pieces were most impactful for them in understanding themselves, I would love to hear.
posted by brook horse at 9:33 AM on January 13 [12 favorites]


I definitely didn't mean to imply that it's not possible to be both autistic and have bipolar, just that that wasn't the case for me. I only ever experienced SSRI-induced hypomania briefly on a couple of occasions, and that plus the severe, persistent lows (with some evidence of mood cycling at the time) were enough for me to get a bipolar II diagnosis. After realising lithium wasn't doing shit/was making things worse, spending time doing intensive trauma therapy and accepting my brain/gender differences, I functionally don't have a mood disorder any more - but clearly there are people for whom both realities are true!
posted by terretu at 9:54 AM on January 13 [1 favorite]


I've tried in vain here in the LA region to get a formal assessment of where I am on the ND spectrum, because I know my brain doesn't process the way my wife's does. And even for a cisgender white dude it's been hard because all of the specialists I've talked with won't do evaluations for adults. The explanation I've been given is we're too good at masking and throw off the diagnostics.

So, here I sit with a childhood diagnosis of ADD and a pretty good idea that I'm wired a bit differently and no way to seemingly put an expert stamp on it. Frustrating.
posted by drewbage1847 at 9:56 AM on January 13 [8 favorites]


(terretu, I didn't mean my comments about bipolar to be a counterpoint to yours specifically. I see the huge number of autistic people who have been misdiagnosed. Anyone who feels their bipolar diagnosis isn't correct should trust themselves. You know you best.)
posted by kitcat at 10:13 AM on January 13


This is an epic post, thank you so much!!
posted by riverlife at 10:21 AM on January 13 [2 favorites]


As a data point, I was misdiagnosed with bipolar because I had a manic reaction to an SSRI. I had a very, very bad psychiatrist who actively stigmatized bipolar disorder and was not using the latest treatment methods and negged me a lot, and would give me more medication everytime I complained about being sick from medications. She was also religious about lithium despite me bringing up concerns about sustained usage, and would not even try other bipolar medications.

I switched to a different psychiatrist (who is straight up an angel) who was a childhood developmental specialist and assessed me twice for bipolar much more thoroughly, and told me that in no way did I qualify as having a bipolar diagnosis. She asked very thorough questions about my own self-perception of what is "risk" and I said that I found not doing homework on a school night to be risky (I am very neurodivergent) and she laughed and explained that 'risk' meant much more extreme behaviors. She said that I can't be diagnosed with bipolar if my only reaction is a manic reaction to an SSRI, because that isn't current literature and that was done 20ish years ago.
posted by yueliang at 11:03 AM on January 13 [7 favorites]


This is just a fantastic post!

I'm in the lucky position of having grown up with an autistic family, and having an autistic partner, while myself being allistic. I don't think I've ever gotten higher than 20 on the RAADS test, linked above, as a data point to put scores in context.

This has some great links I'll come back too. The link on interoception, is really good, and I recommend the "It's not a spectrum" link too.

Sometimes, people joke that if someone says "everyone is a bit bisexual", it means the speaker is bisexual. I think that's maybe true of comments along the line of "everyone's on the spectrum". When someone says that, maybe it says more about the speaker, than about people in general.
posted by Braeburn at 11:19 AM on January 13 [10 favorites]


Some topics I would have liked to cover but so far haven't found good articles about:

The way the official diagnosis process for Autism, which is in fact a bureocratic tool to identify which autistic people are disabled enough to qualify for accommodations and disability allowances, is being used as a way to validate who is actually autistic.

Another interesting topic is the clashing views of early, teenage, and late diagnosed autistic people:

Online autistic spaces have experienced a sudden increase of older self diagnosed autistic people, who express a yearning for the validation of an autistic diagnosis and anger and regret that they weren't diagnosed as children.

This is met with baffled incredulity by those who were diagnosed as children. They had no choice in whether they were diagnosed, often have no positive association with being diagnosed as autistic, and many did not benefit from early diagnosis at all, having been subjected to traumatising "therapy", abuse and neglect.

And stuck in the middle between these two groups, the teenagers, some very young teens, who have enough maturity and self awareness to realise that they are probably autistic, but are prevented from diagnosed because their parents refuse to consider the possibility.
posted by Zumbador at 11:33 AM on January 13 [23 favorites]


I'm an allistic therapist who works with a good number of autistic clients and I fully support self-diagnosis. Honestly, I think in twenty years we will understand neurotypes as something akin to gender identity, aka as an aspect of self that people might want support in figuring out and also can totally come to their own realization and knowing about.
posted by overglow at 12:30 PM on January 13 [13 favorites]


This has been on my mind for a month or two, ever since I decided I wanted a real answer and took a few exams online. The results have been pretty unanimous. RAADS-R score of 164. That one with the five pairs of traits skewing heavily towards the autistic side. It's pretty consistent, but what's worse (and very telling) is that lifelong habits of masking meant my initial reaction was "no, this can't be, I'm so good at hiding that side of myself around other people".

Thank you for these resources. I guess I need to learn how to unmask.
posted by wanderingmind at 12:50 PM on January 13 [6 favorites]


Wow. That Persistent Drive for Autonomy article was like reading my biography. What the fuck hahaha
posted by potrzebie at 12:50 PM on January 13 [5 favorites]


…heh. This isn't your fault at all, potrzebie, but just another piece of evidence for me — as soon as I saw MeFi's "1 new message" popup happen, my initial thought was "oh no I posted wrong and now someone's arguing with me". RSD is a real problem.
posted by wanderingmind at 12:58 PM on January 13 [11 favorites]


This is timely, as I took four online autism assessments yesterday, and if my scores didn't give it away, starting to cry at a question that identified another thing that I though was just me being weird definitely did.

I've suspected I might have autism for about fifteen years, but only recently has it been interfering in my life in a way I want to pursue it a bit more and make some changes (different job, maybe different housing situation, mayyyybe workplace accommodations). The pandemic shook some things, I pushed myself too hard for a volunteer gig, and perimenopause may be coming for me, it's all stacked up.

Revelations from the past couple days include "ohhhh, these things my mom does are things autistic people do" and "oh yeah, I have a BA in English literature masking". I definitely read novels to figure out how to act like a person and why all these other people are behaving like that.

Thanks, Zumbador, for writing this and other commenters for being here.
posted by momus_window at 1:27 PM on January 13 [7 favorites]


I'm surprised no one has complained about the RAADS questions yet. I just did it for fun, but several of the questions gave me pause.

[X] can make me Upset AND confused? Sometimes I feel very disoriented and confused but I'm not upset? Other times I can be upset but very present and not confused?

Or sympathetic? What does that mean? I think I'm sympathetic, but sometimes I realize I was being a shit. Sometimes people call me that. Or call me, sometimes people don't.

And can't there be a sometimes. Because "only younger", older, always or never doesn't cover answers.

I'm proud of myself for being flexible and coming up with answers to some of these... By, figuring out what I think they were asking, lol.

I mean, I scored pretty high, so there's that...

I'd love to read the rest, but kid & spouse & noise & life means there's no guarantee anymore that I'll have that time to myself. :/
posted by bindr at 2:44 PM on January 13 [6 favorites]


RAADS is purely just a screen.

I took it, also, out of interest and the single axis that I scored higher than teens was 'Social Relatedness' which alone was 88, just shy of the 90 ("Stronger indications of autism, although non-autistics may score as high.").

So I'm confident that I'm not typical autistic, that I just suck.

But yes, a lot of those questions are very absolute when I really want to answer at much higher resolutions.
posted by porpoise at 2:52 PM on January 13 [2 favorites]


I'm surprised no one has complained about the RAADS questions yet.

There's a joke among autistics that "did you want to argue with the phrasing or definition of the questions?" is in itself diagnostic.
posted by Lexica at 3:21 PM on January 13 [40 favorites]


Of course, you have to allow for self-diagnosis in the autism community! When it comes to autism, diagnosis is a journey, a continuum. I was officially diagnosed at age 40, but I had my suspicions that I was autistic, because my brother had been officially diagnosed before me. In addition, even if you don't realize that you yourself are autistic, you often run into people who informally try to diagnose you anyway. I even had a girlfriend once who used to joke that I had "Ass-burgers." Given how patchy the medical system is in the United States for non-mental health issues, it's absolutely absurd to insist that somebody who is neurodivergent can only getting their needs met until they get an Official Diagnosis™. And even once you do get that Official Diagnosis™, the journey is never really over because you learn more things about yourself & you always have to weigh the wisdom of safety about how much you disclose about your autism to others.
posted by jonp72 at 4:03 PM on January 13 [6 favorites]


Also, my immediate family (which is only two other people plus me these days) all took the RAADS autism assessment for shits and giggles the other day, and, well, heck, we're all neurospicy.

Even my sister, who I think of as pretty much neurotypical compared to me & our mother, scored just under 100. I was very surprised to get a higher score than my mother, who I've always thought of as more autistic than me


Autist and survey researcher here...

Technically speaking, the RAADS-R is not a measure of how autistic you are. It is a discriminant test that merely answers the question, "Is this person autistic, yes or no?" If you score above the cutoff, you are autistic. If you score below the cutoff, you are not. That's it. It's not a linear measurement of less autistic vs. more autistic. (Although now that I think about it, I think it might be cool to be like, "But my autism goes to 11...")
posted by jonp72 at 4:09 PM on January 13 [7 favorites]


I scored pretty high on the RAADS (120 something) and the other tests linked on that page too. But I feel like a lot of the same questions are asked in ADHD evaluations (and others), and a lot of my answers would come with some qualification if the format allowed for it.
posted by snuffleupagus at 4:29 PM on January 13 [3 favorites]


a lot of my answers would come with some qualification if the format allowed for it.

Also--and I want to stress that this is true of just about any self-administered personality inventory, like Myers-Briggs, and is in no way specific to autism or autistic people taking such an inventory--what they are testing/sorting for is so goshdarned obvious that it is very difficult to prevent self-identification from (unconsciously) contaminating the results.
posted by praemunire at 5:11 PM on January 13 [5 favorites]


Diagnosed at 30 here. The prevailing narrative I hear from other women in the forums I hang out in, is hitting this constant wall of uninformed, misdiagnosing, stigma-doused professionals.
"My psychiatrist says I can't be autistic because I have empathy"
"My doctor says I have theory of mind so I can't be autistic"
"The assessor says I have a lot of symptoms but don't qualify because I can make eye contact and have a job"
"My counselor says I can't be autistic because they've worked with autistic people for twenty years and I should happy I'm not"

Absolute bullshit, yet they are the gatekeepers. I would not trust the establishment as it currently functions to accurately decide if any given AFAB person is autistic or not, it's luck as to which autistic women get their approval. I was diagnosed over a telehealth appointment. I did feel I needed it for validation, and pursued it mostly for that assurance I wasn't "faking" and going through it showed me how honestly arbitrary the process was.
posted by wellifyouinsist at 5:30 PM on January 13 [13 favorites]


neurospicy.

Stealing, with gratitude. Also hugely grateful for this post; just took RAADS and, yep, I'm a winner of fabulous prizes. (It tracks with the Baron-Cohen test which I took some time ago, but I'm very happy about the explanation of the scores in the link.)
posted by Halloween Jack at 5:52 PM on January 13 [6 favorites]


As someone that identifies as "needs support" level of autistic, raptor hands, and very intentional about having to learn social lessons that others got the manual for and I didn't, the phrase "Everyone's a Little Bit Autistic"(EaLBA) isn't nonsense!

I missed it when it was originally posted, so thank you for reposting, but I have a bone to pick with calling it nonsense. On a scale from astrology to math, of things that make sense, "everyone's a little bit autistic" is at least a 4 "makes sense". Nonsense would be a zero or one. You can disagree with their mental model on how things work, and provide improvements so that there’s a more advanced, less 2-dimensional model, but as they say: all models are wrong but some are useful.

In particular, I’d like to contribute by suggesting we use a Kiviat diagram, or radar graph, to visualize the situation instead.

Here's a Kiviat diagram of a totally normal neurotypical person, my interpretation of my most neurotypical friend, and then there’s me.

As we see in the sensory processing category, my friend M is "a little bit autistic" with regards to sensory processing while being normal in the rest. Just that sometimes they don’t hear when someone says something. But it’s minor and doesn’t cause any real problems for them in life. In comparison, I’m a lot “a bit autistic”, and my brain and body cause me an inordinate amount of distress on a daily basis.

So let’s be more precise with our language then, and say "almost everyone deviates outside of what's considered neurotypical, to some degree, on one or more spectrums with which we have established that neurodivergence exists upon", or AEDOoWCNtSDoOoMSWWWHETNEU for short. And that furthermore, there exists a threshold by which we consider someone to have an actual disorder that suggests a distance from what we consider neurotypical. Or ATFTEaTbWWCStHaADTSaDFWWCN for short. Doesn’t quite roll off the tongue. And people are sloppy with language. I mostly talk with people (there's a cat or three, and more than a few computers in there), so I can accept and live with the sloppiness of the phrase EaLBA. But fine, we can trot out AEDOoWCNtSDoOoMSWWWHETNEU, ATFTEaTbWWCStHaADTSaDFWWCN whenever discussing the matter instead if we’d prefer.

Let’s get down to the meat of the issue though. What’s actually important is why someone’s saying EaLBA. If it’s being used to invalidate my problems, or you're using it to hurt me, or remove my support, I humbly ask that you please stop. If, however, you're saying that because you're trying to identify with me, please continue!

I'm 39 and only just realized that not everyone who's nice to me is actually my friend. Some are even foe while being nice! If you're friends with me, please *keep* using that phrase because, I need for you to keep trying to identify with me as a fellow human being. That my bizarre inexplicable behavior that makes no sense doesn’t have you wondering if I’m even really human.

Because I'm a "needs support" on the simplified 2-dimensional spectrum on how much support I need. Sure, simplifying it to 2 dimensions eliminates some of the subtlety a more rigorous and expansive model would give, but I’ve already 540 words in here.

I don't have Temple Grandin or Hannah Gadsby money to get people to help me using money, plus I’m told that only goes so far, so I'm only alive today because of great people in my life that support me. Not even just for free, but at real material cost to themselves. I don't super get it, but I guess they're what people call friends. I live every day in fear that I'll do/say the wrong thing which'll prove I'm not human enough, and they'll abandon me. This is a very real, rational fear due to my lived experience of people doing this to me all my life. Explicitly: this isn't theoretical. I’ve lost track of how many people have abandoned me because of something I did, and that furthermore “you know what you did wrong” and “you’ll never get it”.

So if you’re my friend (which you don’t have to be) and want to think and say EaLBA, to better identify me as a fellow human, worthy of love and care and support, please go right ahead! I don’t care for policing anyone else’s language.

(If you’re thinking this comes from a place of trauma and I need therapy, holy shit you are right. Therapy’s helped but hasn’t solved it, unfortunately, but in case you were about to suggest therapy for me, I super appreciate any and all genuine efforts to help me with my journey.)
posted by fragmede at 5:55 PM on January 13 [22 favorites]


Myers-Briggs*

"They're just questions... In answer to your query, they're written down for me. It's a test, designed to provoke an emotional response. Shall we continue?"

"Do you often use words and phrases from movies and television in conversations?"

* remember that one time Digg did journalism
posted by snuffleupagus at 5:58 PM on January 13 [1 favorite]


Autism fascinates me. I enjoy the company of autistic people. Always have. And then here I am in my 60s, and my therapist finds that I'm autistic. HA! But I got by ok, because I'm something of a savant. I hyperfocus for long periods, and become an 'expert' on whatever I'm after.
posted by Goofyy at 6:01 PM on January 13 [2 favorites]


They told my parents I was gifted. I don't blame Mom and Dad for how badly that hurt me.

Now decades later my attitude is: There's nothing wrong with me. It's society that's wrong.
posted by ob1quixote at 6:10 PM on January 13 [10 favorites]


Question for anyone here who identifies as neurodivergent or autistic - I would appreciate your opinion. I work in a large university providing primary care to students and most of my time is taken up with mental health related issues. There are times when I certainly suspect that someone may be autistic based on their history and how they come across when we meet, but they themselves may not be aware, or it may not be on their radar.

If you were in that situation, would you prefer that a health care provider share their thoughts about possibly being autistic? It sounds like lots of folks would have appreciated a nod in the right direction earlier in life, but I imagine that for some people it might not be welcome news, even if it helps explain their struggles. Thoughts on how to sensitively broach this?
posted by greatgefilte at 6:19 PM on January 13 [1 favorite]


Are there any other communities that are freely accepting of self-diagnosis?
posted by Selena777 at 6:44 PM on January 13


I just couldn't answer the first question is all. It's still in my head, trying to figure it out. I've found a work around for that somewhat after getting unexpected results back from questions..

I kinda learned to clarify outloud my answers when speaking to specialists, because without giving examples, I'm sure I've come back with everything in the dsm but autism. (Okay it's an exaggeration, but I'm feeling lazy and don't want to clarify all that crap when it's documented upstairs.)

Anyway, I'm interested in reading all the vestibular stuff because so much of that was noted as a child, pre-adult-diagnosis, and accommodated, but never labeled. After batteries and batteries of tests. Bah.

(but, seriously, yet rhetorically, how does someone - especially someone female presenting- actually answer a question like rdds q1?!?)
posted by bindr at 7:01 PM on January 13


@greatgefilte: suggest it, but with great sensitivity and you must note that it does not define them, but it may be something to look into. Be careful that they may have presupposed stigma carried with them by their parents/educational system.

@Zumbador: "This is met with baffled incredulity by those who were diagnosed as children. They had no choice in whether they were diagnosed, often have no positive association with being diagnosed as autistic, and many did not benefit from early diagnosis at all, having been subjected to traumatising "therapy", abuse and neglect."

This is actually why I do not have much angst about my mom not getting me an ADHD/autism diagnosis as a child -- as far as I know, back in the 90s/early 2000s Bay Area, they were quite serious about medicating children and putting them into special education even if they were performing above grade level (like me), and my mom didn't really have the language to ask or know more how to navigate it. Even if that was the case, my mom had such severe anxiety and mental health problems that she didn't go and seek out the facts anyway, and what was I supposed to do about that?

She didn't want me to get evaluated because she didn't want me to be forced on medication. Considering that my school had a child psychologist that I was sent to in the 4th grade, but they did such a poor job of explaining why I was sent to them, to either me or my parents, I also don't recall having much faith in the systems either. Even if I wouldn't be forced, I'm not sure if they could have explained it well to my mom. (My child psychologist was weirdly silent and didn't explain anything, I had no idea why.)

Like, yeah, was it absolute hell for me entering high school and college and graduate school to not have the diagnosis? Absolutely, I almost died several times due to not being legible on official records and the extreme amount of bullying I received from classmates, teachers/professors and administrators. But what competent resources were there for POC immigrant parents to explain them that isn't by white psychology professionals who were racist bullies? Not to mention my mom had her own severe mental health issues too, and I'm also pretty sure she's an undiagnosed autistic woman. I fought through this with the skin of my teeth and online resources and friends and queerfam, but these institutions are so hostile.
posted by yueliang at 7:09 PM on January 13 [5 favorites]


(but, seriously, yet rhetorically, how does someone - especially someone female presenting- actually answer a question like rdds q1?!?)

Yes! This question (“Are you a sympathetic person?”) also infuriated me because I have no idea if it is asking whether I have sympathy for others or whether others have sympathy for me. So I argued with the test for awhile and then scored 142, LOL.
posted by carmicha at 7:32 PM on January 13 [5 favorites]


I really feel like I don’t understand what distinguishes autism and ADHD, since as others have stated, so many of these descriptions of autism sound like things I’ve been told or read about ADHD. It makes me wonder any of the terms for various kinds of neurodivergence, and the definitions of what they encompass, are even vaguely close to accurately describing the way brains actually work.
posted by showbiz_liz at 7:38 PM on January 13 [8 favorites]


Are there any other communities that are freely accepting of self-diagnosis?

LGBTQIA+

Writers

Dog owners

Metafilter
posted by Zumbador at 7:46 PM on January 13 [11 favorites]


If you were in that situation, would you prefer that a health care provider share their thoughts about possibly being autistic?

Absolutely.

Present it as a possibility, not as a fact.

But apart from that, try not to talk about autism as if it might be an Awful Tragedy.

Be straight forward and matter of fact, and have some resources to hand so the person has a next step if they want to investigate the possibility of being autistic.

You'll probably have to read up on the practical downsides of having a diagnosis in your part of the world because it's extremely likely that someone who you suspect is autistic, will already suspect that themselves, and have concerns about getting officially diagnosed.
posted by Zumbador at 7:57 PM on January 13 [5 favorites]


A couple things:

1.) I have found this podcast helpful. I need to re-listen to the episodes on dysregulation.

2.) I'm in this boat. I'm having a tough time figuring out what it means for me. If anyone wants to put together a virtual group to meet and process this stuff informally with others who are going through the similar experiences, feel free to message me. If there's critical mass maybe we can put something together. I feel like it would be helpful. Been a while since I posted here regularly but I know this place has a lot of good people.
posted by compartment at 8:45 PM on January 13 [7 favorites]


"Do you often use words and phrases from movies and television in conversations?"

This question is such bollocks. Firstly, movies and television are no longer the dominant cultural force they once were, and it isn't safe to assume that particularly younger people actually watch either. Yes, you can choose to sub in whatever media you do consume if that applies to you, but given what it's testing for...

Also my understanding from my siblings and talking to younger people I've worked with is that it could very easily be understood to encompass modern meme culture.
posted by Dysk at 9:33 PM on January 13 [4 favorites]


"Do you often use words and phrases from movies and television in conversations?"

Typically used words and phrases in real life are also typically used in movies and TV.
posted by NotLost at 10:58 PM on January 13 [3 favorites]


the RAADS autism assessment

i got a 151 what do i win
posted by Jacqueline at 2:25 AM on January 14 [5 favorites]


"My psychiatrist says I can't be autistic because I have empathy"
"My doctor says I have theory of mind so I can't be autistic"


what if empathy and theory of mind are your special interests
posted by Jacqueline at 2:36 AM on January 14 [16 favorites]


Thank you Zumbador.
posted by Coaticass at 3:57 AM on January 14 [1 favorite]


I was wondering if anyone knows more about the autistic therapist quoted trying to use allistic coregulation strategies with other autistics and failing because of (I think their) poor interoception? The article doesn’t go into it.

also hello everyone and welcome!
posted by lokta at 6:26 AM on January 14 [1 favorite]


There's a joke among autistics that "did you want to argue with the phrasing or definition of the questions?" is in itself diagnostic.

Yes, when my therapist gave me some screenings (multiple choice answers) for me to fill out and then for us to discuss at our next session, I did answer them, but the only way I could get through it was by filling up all the margins with disclaimers and qualifiers and complaints about why the questions were bad or unclear or whatever. I think I drove my current psychiatrist crazy b/c he kept being like, "Just give yes or no answers" to some of his screening questions but I kept trying to argue and clarify and explain and UGH. I get so frustrated with those kinds of things.
posted by litera scripta manet at 7:58 AM on January 14 [17 favorites]


I feel this so hard. When I was being evaluated for ADHD some 20 years ago, I was given some kind of questionnaire to fill out. I did maybe half of it and then left because I found it stupid and frustrating and the therapist had made the mistake of leaving me alone. When I came back for the next visit (it was a multi-step thing), the therapist told me not to worry about answering only half the questions. My low tolerance for frustration and impulsive decision to leave apparently gave him plenty to work with anyway. :-)

I remember a few other things from being tested, and two of them were also annoying. 1. He told me that I was a poster girl for ADHD because I had such a mild case (no, no I did not) and 2. since I was a writer, had I considering writing for The New Yorker? It was really good!, which reminded me how people who have plenty of smarts and experience in their area of expertise often know jack about stuff outside that realm. Cause, you know, that is not how you get to write for The New Yorker.
posted by Bella Donna at 8:05 AM on January 14 [7 favorites]


Got diagnosed almost exactly one year ago, I am 45.

I had my suspicions for years, did the online tests but thought they were bullshit. It was clear to me that given the questions everyone would get a positive. I had to see, with initial disbelief, the distribution of the scores in the general population to accept a preliminar diagnosis of “neuro outlier”. I am going to steal neurospicy too.

Like many in this thread I started reading more, and I can count the times I thought the author of some blog post or article had been secretly spying on my life.

I’ve been working on identifying maladaptive patterns of behavior and doing something about it, on being more aware of my emotional and bodily stages, on being more present and letting the mask drop.

Funny thing, I have not discussed or disclosed it with my 9 year old, who is also neurospicy in different way. Last week she told her mother she thinks I may be autistic, mother told her she should ask me. She has not asked me directly, but I really enjoy the way she is doing her detective work.

She asked me if I have so many keyboards because I just like to collect them, or because the different keys and switches feel in ways that make me feel good. She started being really quiet on car rides for a few days, then asked me if the way I tap the steering wheel and repeat words when in traffic help me calm down. She asked me about my deep dives into weird hobbies, my friends, how I choose what clothes to buy. Stuff like that.
posted by Dr. Curare at 9:00 AM on January 14 [24 favorites]


Re: college students, I would soften it with something like “I haven’t spent a lot of time with you, but your background is making me wonder if you ever considered that you might have autism?” If there are other diagnoses that might be relevant, include those as a list of possibilities so you’re framing it as something to figure out and not just sticking another label on them. And even if their response in the moment is negative, it doesn’t mean that you didn’t help them, this stuff can take time to figure out and maybe right then isn’t a time they have the bandwidth for it.
posted by momus_window at 9:05 AM on January 14 [1 favorite]


greatgefilte, as a university student in the UK in the late '90s struggling terribly with mental health issues that I now suspect had a great deal to do with neurodivergence, I would have found it a huge relief if the person I'd seen at the university counselling service had said "Do you know, I think you might be autistic" (and then put that in perspective for me! and given me some genuinely useful reading material!) instead of using CBT techniques to try to argue me out of my position, which backfired horribly.

I already knew there was something odd about the way my brain worked. I didn't know what.

However... that was a different time and place, and autism absolutely was not on the radar at the time for girls like me. Given that college-age people now have grown up in an environment where autism is much better understood, I don't know if my opinion here is actually applicable to your question, sorry!

One thing I am sure about, though, is that if you do bring it up to anyone, they will need someone available to talk to about it, on an ongoing basis. The reason I now believe I'm probably autistic is that a counsellor I saw for anxiety and depression a couple of years ago suggested it to me. But she didn't feel qualified to discuss it much with me beyond that, because it wasn't her area of expertise, and talking to my friends about it went better with some people than with others... so I mostly just talked to myself, on lots of long walks. It would have been really nice to have someone else to bounce stuff off. I'm not sure how well I'd have handled the same revelation at 19, living in university accommodation, effectively trapped in a city and struggling with my course, but I'm confident that having support would have been very important.
posted by ManyLeggedCreature at 12:02 PM on January 14 [5 favorites]


Thanks everybody for sharing your VERY relatable experiences and insights and links. I'm so glad Metafilter exists so I could stop obsessively lurking over at the Ambrosia Software forums in the late 90's (??) and imprint on this amazing website instead. A big part of the way I understand how people communicate and exist comes from you all here on MeFi, a scary thought perhaps but I think I've turned out ok! Getting better all the time really the more I learn about ADHD and autism.

I don't think I've ever gotten higher than 20 on the RAADS test

Wow, seriously thanks for this context. I scored in the 120s (would likely be higher if I really let the mask slip and didn't overthink) but figured that was probably still too low to really say one way or the other.
posted by soy bean at 5:42 PM on January 14 [5 favorites]


Are there any other communities that are freely accepting of self-diagnosis?

Folks with autoimmune disorders (especially folks that don't have immediately-presenting acute diagnosable symptoms).
posted by gentlyepigrams at 7:12 PM on January 14 [5 favorites]


I was diagnosed with "shadows of autism" as a young child so I got a lot of "early intervention" therapy, which might now be called aba? I'm not sure. It felt like it offered institutional authority for everything my mom disliked about me. She was super anxious and lectured me for hours about how my autism would fuck me up and that I wasn't doing enough to address it, that smart people like me end up homeless because of autism. That I was like every family member who ever annoyed her and that I needed to fix that in myself. She was heavily involved with the child study team at school and they swapped emails about who I was friends with. She didn't let me attend a therapist who'd treat my depression when I was profoundly depressed as a teenager because she felt that only an autism therapist focused on time management could help me. I learned to talk in scripts and that most spontaneous speech from me is loud, wrong, invasive. That was every conversation with her. Now I can't hold a conversation with another adult I don't know well. Dating is a nightmare and the deck is already stacked against me because I'm trans. I'm a tech worker in my 30s and I feel so damn lonely but terrified to fix it. Like I've missed my shot to be the kind of autistic person people love. I learned to hide and apologize for my "hyperfixations." My mom hated all of them and pointed out that me having hobbies was a waste of money that dirtied the house. She was obsessed with my earning potential and her home value because my sister was more autistic. Her biggest anxiety was that my autism would somehow make her home a hoarders situation, I'd never move out, and my sister would be stuck in a state institution after her death because of me. She told me in strong, disgusting words why my sister couldn't end up in one of those places. I can't ask questions or make small talk because my attempts to do that at home just got me aggressive criticism. I'm traumatized and ashamed and worried I can't change or bear learning how to change because of my damn avoidant-ness.

I feel so envious of people who get to diagnose themselves as adults and get to learn more about how they can be happy and good in the world. To me, it's hard to not see autism as neurotypical medicine and school professionals backing up behaviors from my mom that felt abusive. I've been to therapy and it's not helped enough. I wish I could feel even a little bit of your hope when I read about autism. So keep that in mind if you feel sad about lost time.

I know this is on my mom. I don't think she was evil or even cruel. I don't think evil is even a useful concept here and it's hard for me to even see her as an abuser. But the language of autism let her take her anxiety that she couldn't control but had to deal with and express, and give it fangs. Being a single mother of two special needs kids gave her every right to be worried. The school resources amplified that anxiety by proxy, and school and home felt like places I couldn't relax and be myself. The adults were just a different kind of bully, but who went after how I thought and spoke instead of just my awkwardness and lack of masculinity. Frankly, any transphobia I experienced before and after coming out pales next to my experience growing up autistic.

I truly hope autistic children are treated better these days, and that parents of autistic kids are taught to love the children they have, not the child autism "stole" or the person the child will become if they "grow out of" their autism. Those people aren't real, and we're flesh and blood and have feelings that may be different but are deeply real to us.
posted by ikea_femme at 7:18 PM on January 14 [31 favorites]


Ikea_femme I have heard so many, too many other stories like yours.

It's something that everyone, not just late diagnosed autistic people should be aware of.

It's all very well to mourn for the life I might have had if my parents had realised that I am autistic. That imaginary alternate life of understanding and accommodation is largely a fantasy.

But I guess it's also necessary and human to mourn for the childhood one should have had.

I'm so sorry you went through that.
posted by Zumbador at 9:42 PM on January 14 [9 favorites]


I really feel like I don’t understand what distinguishes autism and ADHD, since as others have stated, so many of these descriptions of autism sound like things I’ve been told or read about ADHD. It makes me wonder any of the terms for various kinds of neurodivergence, and the definitions of what they encompass, are even vaguely close to accurately describing the way brains actually work.

I agree, although I'm reluctant to say that out loud anywhere except here, I guess. I've heard others suspecting that autism and ADHD are the same thing. But also others who assert that while an autistic person will always have ADHD symptoms/characteristics, you can have ADHD without being autistic.

I think we (by which I mean neurotypical, straight, cis male academics) have really screwed up in figuring out psychology. The truth is that we don't understand mental illness or different neurotypes.

I have no doubt that I'm autistic, but I also consider 'autistic' to be a sort of provisional, working theory that has always been evolving and will continue to evolve a lot over time. It's nice that we're seeing a really accelerating push to figure this out right now.
posted by kitcat at 9:34 AM on January 15 [6 favorites]


Question for anyone here who identifies as neurodivergent or autistic - I would appreciate your opinion. I work in a large university providing primary care to students and most of my time is taken up with mental health related issues. There are times when I certainly suspect that someone may be autistic based on their history and how they come across when we meet, but they themselves may not be aware, or it may not be on their radar.

If you were in that situation, would you prefer that a health care provider share their thoughts about possibly being autistic? It sounds like lots of folks would have appreciated a nod in the right direction earlier in life, but I imagine that for some people it might not be welcome news, even if it helps explain their struggles. Thoughts on how to sensitively broach this?


There's a saying in the autism community that "If you've met one autistic, you've met one autistic." Autism presents itself so idiosyncratically in the people who have it that it's totally a roll of the dice as to how somebody would react if you identified them as autistic. I don't know if I can really give you better advice than to keep your intentions pure & leave yourself open to the possibility that you may be wrong.

I was diagnosed with a lot of things (some accurate, some not) before I got my later in life diagnosis as autistic. On the other hand, I had a brother who was diagnosed with autism several years before me & a lot of people in my life had informally diagnosed me with Asperger's even before I had an official diagnosis. Perhaps the safest way to approach is to say, "Has anybody ever told you that you might have autism or Asperger's syndrome?" That way, you don't necessarily have to say you are making the "diagnosis." In fact, given how literal-minded people with autism can be (I resemble that remark), an autistic person might be less likely to grasp the unspoken subtext of that question (i.e., you personally think that person you're talking to has autism & it's not just an observation by "anybody"), whereas a neurotypical person would be much more likely to get the subtext & be offended by it.

On the other hand, other autists in this thread may have other views about this & I don't think there is consensus. It's sort of a judgment call, play it by ear sort of thing.
posted by jonp72 at 2:11 PM on January 15 [1 favorite]


Ikea_femme Frankly, any transphobia I experienced before and after coming out pales next to my experience growing up autistic.

I can't remember if this been brought up on Metafilter before, but the autistic and trans communities have a lot of overlap. I'm just a cisgender guy, but I participate in a lot of surveys that are conducted through the research community, SPARK for Autism. According to one of the surveys sponsored or facilitated by SPARK, people on the autism spectrum are disproportionately more likely to be LGBTQ & I believe the odds were even more disproportionate when focused only on trans people as opposed to the LGTBQ category as whole. Here's a press release on the research that came out in 2020.

I've also found the YouTube video Psychiatrist Explains Why Autism and Gender Identity Are Connected very interesting. It's by Dr. Alok Kanojia, who broadcasts on YouTube as "HealthyGamerGG." In the video, Dr. Kanojia argued that clients with autism should be evaluated for gender identity issues & that clients with gender identity issues should be evaluated for autism, because the two phenomena seem to go together for a lot of people & he cites some research that explains why. As a cis person, I can't vouch for it myself, but I read a lot of the comments & there were a lot of trans people who were like "I feel seen" in the comments. So maybe it can help somebody in this thread.
posted by jonp72 at 2:35 PM on January 15 [8 favorites]


I'm surprised no one has complained about the RAADS questions yet.

Okay, my turn.

What's with that age-16 threshold? Nothing much changed for me until my mid to late 20s (and the stimming urge didn't fade until my 40s).
posted by Rash at 6:57 PM on January 15


I'm working on developing a "crash course" for autistic people newly diagnosed by my clinic, but there's just so MUCH information I could include that I'm struggling with where to start and end. If anyone has further insight on which pieces were most impactful for them in understanding themselves, I would love to hear. -brook horse

I found Mykola's page about emotional processing really useful (it's also a good "what do I do now that I'm aware of alexithymia" resource). Lately I've been using the emotional signal of shame to help me identify the "holes" in my set of abilities (i.e., things I potentially need to accommodate for).
posted by heatherlogan at 7:42 PM on January 15 [5 favorites]


If you were in that situation, would you prefer that a health care provider share their thoughts about possibly being autistic? It sounds like lots of folks would have appreciated a nod in the right direction earlier in life, but I imagine that for some people it might not be welcome news, even if it helps explain their struggles. Thoughts on how to sensitively broach this? -greatgefilte

This Twitter thread by psychiatrist Sam Porter provides some concrete and excellent advice for health-care providers on broaching the subject with patients they think may be autistic.

There's also this guide to supporting effective communication with autistic people in health-care settings recently produced out of U. Brighton.
posted by heatherlogan at 7:50 PM on January 15 [1 favorite]


And to answer your first question, 100% yes I would absolutely have preferred that a health-care provider shared their thoughts about me possibly being autistic. None ever did. I figured it out myself at age 45, fought my dismissive GP for a referral, and was formally diagnosed at 47 after a catastrophic burnout.
posted by heatherlogan at 7:51 PM on January 15 [4 favorites]


Additional follow up to my comment -- my mom didn't really want me to be forced into medication or ABA therapy because she thought it would be really detrimental to my well-being and unnecessary, and tbh, I really don't blame her for making the call that she did because like yeah, she's right, and ABA is proven to be really bad for autistic kids. I'm probably planning on calling her a few times to ask her what exactly went on when I was a kid though, regarding this whole elementary school and medical diagnosis process in the early 2000s.

She did note that I was probably autistic offhandedly when I was 20, but she thought I was legitimately doing fine. I think late-diagnosed or self-diagnosed autistic adults have a lot to unpack, and I am just hoping people can give themselves grace as they figure out the messy narratives of how to make sense of it, since I'm still making sense of mine.
posted by yueliang at 1:36 AM on January 16 [6 favorites]


Forgive the lack of cohesion/clarity here, but dropping some notes before I go to bed:

There are as many similarities between autism and ADHD as there are between autism and schizophrenia. This is because they are all developmental disorders (forgive the use of the term "disorder," it's just what the research is under)--bipolar disorder is being recognized as a developmental disorder now too.

I mean, don't get me wrong, autism and ADHD are very connected. But I think if we want to declare ADHD and autism the same thing, we have to strongly consider going back and declaring autism and schizophrenia the same thing as well (as we once did). The connections and overlap are at least as strong, if not stronger. The presence of psychotic symptoms are of course a differentiating factor, but people with schizophrenia present with the same sensory, social, and cognitive symptoms as autism even when they are not experiencing psychosis. There's actually more evidence for neurobiological and genetic similarity between autism and schizophrenia than for autism and ADHD. (I can infodump about this more later if people want.)

I'm not actually opposed to conceptualizing them all as various manifestations of one thing, but nor am I saying it would be better if we did go back to lumping autism and schizophrenia together again. I think there's good arguments either way. But I do think that the ADHD/autism dialogue has been drowning out and ignoring schizophrenia/autism dialogues in the past few decades, which is unfortunate.
posted by brook horse at 7:42 PM on January 16 [6 favorites]


My kid is autistic and I feel like I’m failing him as a parent every single day.
posted by davey_darling at 5:33 AM on January 20 [5 favorites]


Oh, late to the party, but...

And stuck in the middle between these two groups, the teenagers, some very young teens, who have enough maturity and self awareness to realise that they are probably autistic, but are prevented from diagnosed because their parents refuse to consider the possibility.

That wasn't even what I was going to mention as a feature of my adolescence -diagnosed experience--what I experienced was the dual whammy of knowing you're autistic but having that treated as a helpful list of traits of suppress, hide, and mask rather than as, y'know, a disability. I think a lot of adults who fantasize about having been diagnosed earlier assume that the insight of autism would be paired with at least an attempt at support or acknowledgement, you know?
posted by sciatrix at 8:42 PM on January 20 [5 favorites]


I'm pretty sure it would have been worse for me to have been diagnosed with autism in 1987 or whenever than not. Perhaps not in 2011 or so when I last sought pharmacological treatment for ADD while in grad school, although there's a part of me that definitely feels like at this point it in my life and in politics it might be better not to officialize any new marginal (or marginalizable, if that's a word) statuses.

With than in mind, my searches suggest a credible evaluation for personal use only outside of insurance and reportable channels is around $1,500-$2,500 versus $5K or more (before benefits).
posted by snuffleupagus at 9:13 PM on January 20 [2 favorites]


Oh, I would definitely not have wanted to be formally / clinically diagnosed in childhood. The problems I had in adolescence were with my peer group, and would in no way have been improved by an autism diagnosis, especially not one resulting in any visible special treatment at school. I shudder to think of it.

Being given enough information at university age to make sense of those secondary-school problems, though, might have saved me from spending the next ten years so scared of people I hardly spoke. And access at that point to a clued-up counsellor and a stack of books might have got me to where I am now (in terms of understanding myself) without the twenty-five years of extra missteps along the way. No way of knowing what difference it would actually have made, but I was carrying a lot of unnecessary and undeserved emotional baggage around for a very long time, and I wish I hadn't had to do that.
posted by ManyLeggedCreature at 10:50 AM on January 21 [8 favorites]


Yeah, for sure--and I found those aspects of it intensely useful, absent the parental pressure to mask and deny. I learned a lot by just having diagnosis as a mental model I could check in with adult communities about; in some ways, WrongPlanet forums were a huge part of my social education as a teenager.

I think I am mostly just startled because I was thinking in terms of chronological changes in the way autism diagnosis is approached and the way autism is understood by clinicians. Those changes have generational effects, because of how frequently autism was diagnosed and also how age structured those diagnoses really were! It sort of felt like a cohort getting lost in the shuffle.
posted by sciatrix at 8:49 PM on January 21 [4 favorites]


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