“She’d watch & watch & watch, but could never figure out when to join”

February 21, 2020 2:28 PM

The best $500 I ever spent: My autism diagnosis: “While many of the nonautistic people I talked to in those years seemed to assume that autism was at risk of being over-diagnosed, I was more worried about who was still being left behind. I wasn’t seeing rich people buying autism labels for their kids or people pretending to be autistic for fun. I was seeing the same lack of awareness that failed me decades ago still failing other autistic people — especially autistic people of color.” [cw: suicidal ideation]

Previously on MeFi by Sarah Kurchak:
Dangerous treatments intended to get rid of autism.
The Magnificent Seven and diarrhea.
On being too intense with autism (and visiting Portmeirion).

posted by ambrosen (38 comments total)

A quick note just to give a little context: there have been a couple of posts here relating to autism recently, and in the comments people have been somewhat sceptical of whether adults should seek diagnosis for autism, and also implying that being an autistic adult without a diagnosis isn't a problem.

I think this essay addresses those issues very neatly, and it's a nice short easy read.
posted by ambrosen at 2:33 PM on February 21, 2020 [21 favorites]

Thanks for this.
posted by Reyturner at 2:51 PM on February 21, 2020 [2 favorites]

I'm sure this is addressed in TFA, but my limited experience so far has been that the resources available for adults with autism are very, very white, and that shows in all the ways you'd expect. The one (one) black woman with autism I'm friends with was basically like "you have no idea," and, yeah, I don't. And even what I've observed has been pretty bad. and the research on girls and women with autism is barely getting started. In the meantime I bet there's a lot of autistic girls of color in public schools getting diagnosed with things they don't have (or worse) because of racism.

It's also significantly more expensive than $500 to get an adult assessment in the United States.

I wasn’t seeing rich people buying autism labels for their kids or people pretending to be autistic for fun

Oh man. Yeah. Anyone who still thinks this is a thing, or wants to concern troll about the new fad in diagnosis or whatever like the last umpty million threads -- please, try telling people you have autism or an asperger's profile. See how they react. See how fun it is.

Anyway...yes, discovering this about yourself as an adult is empowering. It gives you a whole ever-expanding toolbox of tools to describe, understand, and cope with your experience. And the more of us who do get a diagnosis, or who self-diagnose, the stronger the community gets. FWIW the people I've spoken to at AANE (aane.org) have said they've seen a whole bunch of women in their thirties and older contacting them in the last few years, and the numbers are growing. My personal hunch is that it's likely there isn't a sex or gender discrepancy in actual occurrence of autism, just in diagnosis -- which means something like 75% of women and girls, particularly those with "high" functioning or an asperger's profile, have gone undiagnosed.
posted by schadenfrau at 3:15 PM on February 21, 2020 [33 favorites]

Also, also: right now the community stuff available, like support groups and what not, seem to be really difficult to manage, because there are such varying levels of needs, and everyone gets lumped in together. The more people are involved, the more granularity we'd see.

For any adult women in NYC with a formal diagnosis, there is Felicity House -- although it exists due to the largesse of a one super wealthy woman with autism, and, uh, the requirement of a formal diagnosis isn't, in my opinion, awesome. But it exists and people seem to get a lot out of it, and if you contact them and ask for other resources, they'll help you out. AANE (aane.org) will also do the same.
posted by schadenfrau at 3:21 PM on February 21, 2020 [3 favorites]

The article focuses on the benefits of the validation of diagnosis, of having a name for one's pain. But what are the practical consequences of a diagnosis? In terms of "Oh, phenomenon X is due to autism after all? Well in that case we've been wasting time treating it with A. What you really need is to start treatment Q, which should take care of it."

I can see the 'best $500 I ever spent' being worth it, much more in fact, for peace of mind. But beyond that, is there a 'now that we know, this is what we can do about it'?
posted by bartleby at 3:31 PM on February 21, 2020 [6 favorites]

I wasn’t seeing rich people buying autism labels for their kids or people pretending to be autistic for fun
Oh man. Yeah. Anyone who still thinks this is a thing, or wants to concern troll about the new fad in diagnosis or whatever like the last umpty million threads -- please, try telling people you have autism or an asperger's profile. See how they react. See how fun it is.

I definitely don't think it's a thing -- publicly. And it's definitely no fun at all for those neuro-atypical friends of mine who deal with Various Gatekeepers who know of their atypicality and use that knowledge as license to color every behavior of theirs as pathological.

But also one of the major aspects of the Varsity Blues scandal was rich folks getting faked-up learning disability "diagnoses" (including IIRC not just dyslexia but Aspergers as well) for their lazy spawn, thereby getting specially proctored tests for some of the kids to get extra time to do better, and for others to be straight-up impersonated by a ringer to take the test. However, I'm also 100% sure that none of these parents or children told anyone about it other than the College Board, and their co-conspirators.
posted by tclark at 3:36 PM on February 21, 2020 [2 favorites]

And it's definitely no fun at all for those neuro-atypical friends of mine who deal with Various Gatekeepers who know of their atypicality and use that knowledge as license to color every behavior of theirs as pathological.

I'd have added the blink tag here too.
posted by mce at 3:52 PM on February 21, 2020 [6 favorites]

Thanks for posting this. I have been reading the recent spate of disability related posts, and especially the posts on autism, with interest and solidarity, even though I don't have a lot of comments to share.
posted by Snarl Furillo at 3:58 PM on February 21, 2020 [1 favorite]

So as an instructor, here's my perspective on extra time on tests: generally speaking, it is not really an advantage for students. I habitually proctor almost all of our disability extended time sessions, and most of our students who receive extra time don't actually use the whole time. Many of them mostly find it helpful to have a quiet room with minimal moving for distractions, or the reassurance that if they wind up taking a lot of extra time to do the math they'll still have time to answer, or time to puzzle out the letters if dyslexia is an issue. The students who have weaker grasp of the material are not helped by having extra time: they actually tend to use it to talk themselves out of correct answers, freeze, and ruminate. The students with disabilities are helped by having access to it, because they have specific needs that are served by having either the extra time or the other space. For most students, the benefits conferred by the alternate time are not actually all that beneficial.

So if wealthy families are really jumping through all the hoops to fake a diagnosis and sign a student up with SSD and fight to get that student through the notifications about accommodations with the instructors and deal with the inevitable instructor who looks at accommodations and says point blank "no, I won't/can't do that" and schedule their alternative testing in advance and show up to a totally different place and time and deal with all of that extra work.... if those families are doing that, well, uh, I wish them all the benefit that all that extra work can confer.

Obviously, using faked disability diagnoses for wealthy children to avoid taking exams at all is a scam and a scandal. But the problem isn't having services for disabled students; that service would be unethical and unhelpful for anyone, no matter what their disability is. The problem is dishonesty. Increasing mutterings about faked disabilities often create problems for students with real disabilities, as people decide that they can tell from a casual observation who is really disabled and who is not.
posted by sciatrix at 4:00 PM on February 21, 2020 [29 favorites]

The buying a label cliche may be partly rooted in changing definitions over time. Like, I am An Old, and the kid next door was autistic. How did we know? Because he was incapable of speech or taking care of himself. That was the face of Autism a few decades ago.

So someone lives with that benchmark for a lifetime, then starts getting told that much smaller things are also autism. 'You say you're autistic...because you find tight clothes uncomfortable?' They'll push back over the definition creep, and the implication that bad people are prone to hide behind diagnoses (it's not that I'm just a selfish asshole, see, I have a diseeeeeeease!)...and you end up with people saying things like, "yes, you spent too long in bright sun and and your skin got a burn; but this is not proofnor your claims that you are actually a vampire" in regards to what is and isn't autism in their eyes.
posted by bartleby at 4:01 PM on February 21, 2020 [3 favorites]

Or, well, shorter me:

It's no fun when I deal with people who know I'm autistic and use this to infer that I am basically just the same as whatever stereotypical character they have in mind.

It is even less fun when I disclose that I am autistic as a way of trying to communicate what my needs are out of an interaction and I then get to deal with people who look me up and down and squawk "You're not autistic! You're too articulate/smart/organized/put together/verbal/capable of hearing no/human!" Or even worse, "you're not autistic! Asking for that--you think you're better than me? You think you should get special treatment?"

The latter are generally what we mean by gatekeepers, just so you know. Not the ones who think stereotypes are reality.
posted by sciatrix at 4:10 PM on February 21, 2020 [27 favorites]

My least favorite are actually the people who turn around and use your autism as a way to “win” an argument or a conflict or as proof that they couldn’t possibly been in the wrong. Like disclosing has just added another missile to their gas lighting arsenal.

That was...an instant red line for me. To be fair, so is the “no, you’re not autistic” response. I just do not have the energy for that in my life.

Disclosure can tell you a lot about someone.
posted by schadenfrau at 4:37 PM on February 21, 2020 [12 favorites]

"My rule-following autistic brain wouldn’t allow me to think of myself as really autistic until someone officially diagnosed me as such."

Yet another mirror I've just come upon unexpectedly. Fuck!
posted by heatherlogan at 5:08 PM on February 21, 2020 [22 favorites]

Also, also: right now the community stuff available, like support groups and what not, seem to be really difficult to manage, because there are such varying levels of needs, and everyone gets lumped in together.

So true; I was referred to an organization that deals with people who are not high-functioning at all. I felt completely out of place as a high-functioning person who lived autonomously and had a job. Since last month I'm part of a group intended for high-functioning adults, an oh boy do I have a lot in common with the other members, it's very nice to find people with similar problems and lives to me.
posted by Monday, stony Monday at 5:16 PM on February 21, 2020 [4 favorites]

I can see the 'best $500 I ever spent' being worth it, much more in fact, for peace of mind. But beyond that, is there a 'now that we know, this is what we can do about it'?

I have adhd, not autism, (tho they are similar in some ways and even I sometimes wonder; especially comparing notes with a friend who’s son is diagnosed with adhd AND autism). There are some medications for autism, though not to the same extent of adhd. Still, if it helps, then yes.

Most value though seems to be in interventions and coping strategies. As I mentioned, adhd and autism are similar in some ways. But the cause and coping strategies for both are going to be different in a lot of cases.

I don’t know if it speaks to those with autism, but I know that when I was first diagnosed with adhd in 2015, learning about the disorder suddenly made ME make so much more sense. Learning about adhd was like I found a user manual for my brain. I didn’t have much of an inkling I had adhd before a therapist suggested it, so maybe I could have gotten by by assuming without a formal diagnoses had I thought of it. But I don’t think so. Now I know what interventions I need for this hard to manage brain.

I’m sure this and many other reasons make it more than just a piece of mind.
posted by [insert clever name here] at 5:25 PM on February 21, 2020 [18 favorites]

Oof. Big reminder of that time last semester where I started slamming my hands on my head and wanting to die because I couldn't start any of my homework because there were too many bad sensory things going on and I was too overwhelmed to do anything to fix any of them.

Personally, I feel like I've come to a place where even if I don't always accept the label "autistic" for myself, I am comfortable with "neurodivergent" and can find understanding and empathy for myself there. Of course this may only be because I literally have the diagnosis "you're neurodivergent, that's all we know fam" (cognitive disability not otherwise specified). So even when I've just been working with 10 year old autistic boys and am in "there's no way I'm autistic" land, I at least have that to fall back on. A diagnosis wouldn't, I think, do much for me in terms of validation. Some, definitely, but probably not $500 worth (which sounds about right for what seems to have just been an interview + feedback; any actual testing would definitely cost more).

But man, being an autism researcher in the clinical psych world, I really wish I didn't have to keep saying "them." I've never directly tripped up, but I think people get a little suspicious when they ask about a particular autistic experience and I go way into detail about what it's like. I always have to backtrack with like, "That's what my autistic friends tell me, at least." For me, having a diagnosis would mean I stop having to pretend that this isn't my life. And yeah, I know there are downsides to being labeled autistic in the workplace, but I already let the cat out of the bag about having a cognitive disability because I just can't shut up, and judging by my place in the social circle, people already fucking think of me as the weird/rude/annoying one, so whatever, at this point, you know?

Unfortunately I can't get tested because I know how to conduct all the testing, and even if I get someone willing to just work from an interview I'll likely get hit with "med student syndrome," so. Yeah.

But beyond that, is there a 'now that we know, this is what we can do about it'?

There's very little in terms of research (that's actually likely going to be the subject of my dissertation). But there's a lot in terms of clinical/community knowledge, that can at least give you something to try, even if we aren't sure how well it works on a grander level. Also, as I was mentioning in a previous thread, beta-blockers are sometimes used for autism (but again, not much research), and I've personally noticed an improvement in my stress response on them, though I'm prescribed them for a different reason. Anecdata, but a few other people in that thread relayed similar experiences.
posted by brook horse at 5:30 PM on February 21, 2020 [18 favorites]

Further anecdata: CBD (with a dash of THC) seems to be very helpful for me. I can’t remember if beta blockers were helpful for the stuff I now identify as autism-related when I was on them, but I developed an allergy anyway, so.

Perhaps weirdest, though, by far — by far — the best thing for my autism stuff, but especially sensory issues, has been low dose testosterone supplementation. Like I can go places like a (nearly) normal person now. This is *wild*. There is definitely no research on this. (At least not that I can find.) Maybe I’m just an outlier. But it’s been huge for me.
posted by schadenfrau at 5:41 PM on February 21, 2020 [9 favorites]

The article focuses on the benefits of the validation of diagnosis, of having a name for one's pain. But what are the practical consequences of a diagnosis? In terms of "Oh, phenomenon X is due to autism after all? Well in that case we've been wasting time treating it with A. What you really need is to start treatment Q, which should take care of it."

I can see the 'best $500 I ever spent' being worth it, much more in fact, for peace of mind. But beyond that, is there a 'now that we know, this is what we can do about it'?
posted by bartleby at 6:31 PM on February 21 [1 favorite +] [!]

From the author responding to bartleby (Sarah is a friend of mine - I let her know the article was posted here): "Does someone want to tell this person that I'm sorry I couldn't fit in all of the epilepsy testing and monitoring that my diagnosis eventually gave me and the subclinical doses of SSRIs I tried as a result of the diagnosis that didn't fit into the word count because you can't cover an entire life in one bloody essay? "
posted by obliquity of the ecliptic at 6:18 PM on February 21, 2020 [13 favorites]

I haven't had time to read the full article yet, but one factor in the US for actually having a diagnosis is that then ADA protections can kick in. A lot of the stressors at my job could be lessened if I had the actual autism diagnosis instead of just my self-diagnosis.
posted by jkosmicki at 6:25 PM on February 21, 2020 [5 favorites]

Mental health treatment can also change dramatically. Personally, mine improved considerably when it occurred to me to disclose the autism diagnosis to my psychiatrist. The clonidine which has been so life altering for me, for example, became available to me only because I blinkingly explained that yeah, I had been autistic this whole time--this from a psych, I should add, who I'd been seeing me for three years at the time. (Clonidine btw is an alpha agonist, not a beta blocker.)

My therapy experience also improved wildly, because half the reason it hasn't occurred to me to share was that I was casually eliding much of the work I was doing and much of what I was struggling with, day to day, and coating that in a thick layer of shame. Hard to dislodge that shame or even try to start when you're hiding it from everyone. And knowing I was autistic made working on breathing and other things I could do to get into sync with my body more more obvious, too.

It's not about peace of mind. It's buying the luxury of having your lived experience understood and believed.
posted by sciatrix at 7:03 PM on February 21, 2020 [18 favorites]

growing up - I was always considered weird - I was the super smart kid who didn't seem to be concerned about social norms,styles, etc. I've had friends (and my spouse) remark on the times when I act like a broken robot, where I feel like I've done all the social niceties and walk away like a robot returning to home base. I have my very serious obsessions (google my name - not that hard to figure out).

I'm pretty well convinced from reading that I must be both high functioning and non-neurotypical and I'm old enough that everyone's definition of Autism was Rain Man. The links on the AutismSpeaks website make it seem distressingly unlikely to be properly diagnosed as an adult. I'd love to get a sticker to put on things so I can adjust, plan, adapt cause yeah, I hate living in the world of the "self-diagnosed"
posted by drewbage1847 at 9:33 PM on February 21, 2020 [5 favorites]

"Does someone want to tell this person......in one bloody essay?"
Uh-oh. Please pass on that in asking my question, I wasn't criticizing the author's essay. Knowing that there are a fair amount of neurodivergent MeFites, I was positing my question to the MeFi thread, not @-ing her. My intent in asking - OK but then what comes next - was to hear from this community: "Well for me it meant ___". That's what I was trying to provoke.

Mainly because I'm aware of "what good would getting a diagnosis do me" syndrome. (Ask your doctor about untreated depression. Or don't. It doesn't matter anyway. No one can help you.) That's part of the discussion, too. So I was hoping to also hear some "yeah, getting my diagnosis was a nightmare too, but once I got it, wow ..." community stories as well.

I got what I wished for in the discussion around the piece, but with the side effect of seeming to discount the original article itself, in the eyes of its author? Sorry for that. Not my intent.
posted by bartleby at 10:21 PM on February 21, 2020 [15 favorites]

I saw the diagnosis as a surrender of sorts. For me it was allowing the neurotypicals to win, since they're the ones who have declared their way as healthy. So with a diagnosis we can fit into their society, but I guess it's the only society available and it's painfully lonely to not know how to fit in.

She write beautifully in a way that amazes me that she can understand how she is different and yet understand on such a fine level what she is different from.
posted by Obscure Reference at 12:16 AM on February 22, 2020 [5 favorites]

My rule-following autistic brain wouldn’t allow me to think of myself as really autistic until someone officially diagnosed me as such.

As another undiagnosed adult AFAB person with a lot of autism traits and behaviours: yes, this!

And the related feeling of constant, chronic friction that I have a brain that is really good at analysing, pattern-matching and categorising, that believes it has identified a particular pattern about itself that matches a known concept in the wider world, but which is unable to formally identify as such due to the shame/stigma/perceived not-realness of self-diagnosis.

I suspect I would feel huge relief from being allowed to put myself in the box that I am already strongly convinced that I've correctly identified that I belong in. It was very reassuring to hear from another commenter in the Nicole Cliffe thread that autistic people are generally accurate at self-diagnosis, but that's still not the same thing as the relief of having that diagnosis confirmed by an external source, even though at the same time I hate the medical gatekeeping model we have in the UK around significant mental health and developmental stuff as much as I hate the medical gatekeeping around gender. I've had such significant trauma from past psychological testing and mental health treatment for other conditions that I'm really wary of putting myself through that again, plus I suck at spending money on caring for myself due to other past trauma.

So for the last five years or so I've been stuck fighting internally between "it would feel so nice to be correctly categorised" and "it's too dangerous, you know you can't trust the people who do that kind of work and they've seriously hurt you before".

I'm about to go back into therapy with a therapist who previously brought up their perception of my autistic traits as well as me mentioning them, so who knows, maybe I will be able to make some space to shift this around a bit and work through it, but I've felt very stuck on it for a very long time.
posted by terretu at 12:44 AM on February 22, 2020 [11 favorites]

Every therapist I have seen (over almost 40 years of regular treatment) has told me that they believe I'm autistic, and every one has also said they don't see any point in getting a formal diagnosis because it wouldn't change anything. Now I'm starting to wonder, especially since I'm in the UK so the process is free.

Thanks for the link, it has given me much to think about. I've seen a lot of material over the years about the effects of autism, but this is the first time I've read something about the effects of an autism diagnosis. Thank you (and Sarah, if she's reading).
posted by Gamecat at 1:46 AM on February 22, 2020 [1 favorite]

Upthread some people mentioned autism and ADHD. Because I only learnt this year, the two co-occur very commonly. With my partner I initially thought she had ADHD the doctors said she didn't because she got to her appointment on time, and later she was diagnosed with autism. We're all still sure she also has ADHD.

If you're looking into diagnosis, it could be both!
posted by Braeburn at 4:07 AM on February 22, 2020

My spouse got a neuro psychological assessment as an adult, which after all the self pay and stuff boiled down to well your over 18 now so we can't offically diagnosis you with autism, but your autistic.

She's interesting in that she was already on disability when this happened, but wanted to go back to school. She had an IEP through primary school, she had gotten services with various labels. She also had the misfortune of significant childhood trauma, and ended up shuttled through a mental health system not willing to work with the sensory things. Combined with a school system that didn't prepare her that she would in fact need services in college and a employment system that would promote her until she couldn't handle the work load.

Over and over and over again. As time had changed and understandings have come and labels especially for women become accessible it helps. It helps her to indentify. It helps her to understand. To have a narrative across time. That these patterns weren't messages of not good enough or not trying hard enough, because she fought for everything she ever tried to do. That disability makes sense for her. That she is smart and capable but also austism has hard sensory limits .

We worry about her SSDI, because the actual thing she was placed on for isn't the real truth, she's not treated for that. She presented that way, she was labeled put there by someone who didn't know what else to do at the time . But it's worked this far and she's passed all her continuing reviews.

But she's also never really been able to get services. The mental health services aren't quite right. The autistic services are for people lower or higher functioning. She finds herself looking for resources for being a partner, for being a parent. She wants support and help. And it's fleeting or discounts her amazing strengths.

Overall talking about this is so important. All the journeys of everyone who may fit this. Who might find some use from it. Thank you for sharing.
posted by AlexiaSky at 4:18 AM on February 22, 2020 [3 favorites]

My first clue happened in my 50's. I had a nonprofit employer that was big on development and testing so I had my first Myers-Briggs. Afterwards, I went to review the results. The little dot that represented my score was in the farthest corner of, I believe, the architect box. I said something to affect of, "Wow, is that my score?" Her answer was something like, "No, but the test won't let us plot beyond the bounds of the box," motioning towards the edge of the paper with her hand...
posted by jim in austin at 6:08 AM on February 22, 2020

Every therapist I have seen (over almost 40 years of regular treatment) has told me that they believe I'm autistic, and every one has also said they don't see any point in getting a formal diagnosis because it wouldn't change anything.

I'm inclined to agree with this. In my personal experience, autism is not a problem which can be tackled in itself, but a wellspring of other associated problems which need to be addressed individually. There's not much I can do to change my autistic cognitive style, but in learning about it I now have an invaluable frame of reference for approaching related issues, such as ADHD, depression, anxiety etc, all of which can now be addressed in its context. In other words, a formal diagnosis of ADHD got me a script for Ritalin, while hormone therapy for the menopause got me a low dose of testosterone (high-5, schadenfrau!) neither of which needed an ASD evaluation.

Of course, anyone who feels the need for certification should go right ahead, particularly if it will get you better access to services. The benefits I have from self diagnosing are the insights I now have, about myself and of the world around me. No piece of paper is going to change that. Furthermore, I can't help but feel a deep discomfort at equating the cognitive style with a catch-all pathology, when the mental health problems I have are not necessarily to do with autism, but with a world that forces me to perform according to a set of alternative pathologies that don't happen to match my own. In other words, I see the classic error of replacing normative moral values with mental health evaluations, wherein we try to fix something which just ain't broke. Yes, I'm a bit odd, but I'm not a complete write-off just yet, and I think the best way we can help ourselves is by talking about it, sharing information, and insisting on better support for the problems we experience.

So, as usual with this fine writer's essays, I find the real value is in a comment she makes further down:

I was seeing the same lack of awareness that failed me decades ago still failing other autistic people — especially autistic people of color.

I wish she had made this the whole damn point of the piece, which is a pity because then it wouldn't fit the byline's $500 conceit. Because in all my perversity, I'd rather see fewer diagnoses and more self-identity among those of us who are empowered to do so. The badge is useful insofar as it helps us to take responsibility for our wellbeing, but beyond that, it's limited. On the other hand, we can make things genuinely better for ourselves and others by continually feeding the ever-growing awareness of the myriad experiences that ND represents. There's a great deal we don't know about how autism influences other problems, and we need to know how to address those if we are to help ourselves. And we need to carve out space for a much wider discourse than the label currently contains, because that one label is never going to fit all of us.
posted by Elizabeth the Thirteenth at 9:25 AM on February 22, 2020 [5 favorites]

I was the smart, artistic kid with undiagnosed autism that didn't want anything to do with anyone, particularly people my age. I loved talking to adults that took an interest in my art or my interests (which ranged from science fiction to mythology to language to comics), but if you put me around anyone my age or close to it, I became very aloof and visibly disinterested. I would wander off by myself or read/draw alone. So I thrived in school, but I mostly just wanted to be left alone by my peers and wasn't allowed to be. I didn't have any friends for long because I didn't really know how to be a friend and yet this didn't bother me so much as other people's perception that I was "weird" did. After all, I didn't ask for anyone to be my friend, I simply failed over and over when anyone attempted to be mine. I am not certain how many other people on the spectrum actually desire to be social but just can't figure out how or, like me, find the gap/blind spots in my social functioning to lead to disinterest in it.

To a certain extent this is true now, even if my social development is somewhat caught up, but I went through some very dark times before I was diagnosed when my social failures kept piling up, leading me to believe I was broken and worthy of the constant disdain I was experiencing. My diagnosis has helped me to realize it's fine for me to not desire much social interaction but to also adjust the way I interact with others so that I am not misunderstood. It has made me far more comfortable in life than I was previously.

I know a fellow who is currently using his recent autism diagnosis as a means to excuse personal responsibility for his own social difficulties (bluntness, lack of empathy, mind-blindness etc.) and that is quite possibly the worst way to utilize it. People who are physically blind don't just walk out into the street and shrug and blame others for the wrecks they cause, and this is exactly what he is doing only w/r/t mind-blindness, etc.
posted by Young Kullervo at 11:03 AM on February 22, 2020 [13 favorites]

I'm 30 and have just recently been coming to the realization that I maybe could possibly be autistic. I mentioned it to my wife who was immediately supportive and eager to try for a diagnosis (getting her ADHD dianosis as an adult has done wonders for her). I'm still not convinced it's worth it for me, even with this almost scarily timely article.
posted by wellifyouinsist at 2:51 PM on February 22, 2020

Now I want to visit Portmeirion so badly
posted by ocschwar at 6:15 AM on February 23, 2020 [1 favorite]

Apropos nothing but quoted for truth:

It's also significantly more expensive than $500 to get an adult assessment in the United States.

DrMsEld (a practicing licensed clinical psychologist) and her firm charge in the thousands for virtually any evaluation or standardized testing that they do and they're some of the more affordable options out there (taking medicare and various insurances and not just private pay clients). There's a reason, well lots of them actually, but the test themselves are often expensive one-offs that have to be purchased individually from a licensed supplier/owner, they can only be administered by a licensed PhD who is experienced (sometimes certified specifically) for a given measure, they have to be accurately and painstakingly scored and interpreted by the same (I think, though it is perhaps not an ethical/professional violation for a non-PhD-but-probably-at-least-Masters-level-person to do the scoring, please don't quote me) and then have said PhD write up a report on said individual that, oftentimes, must be coordinated with any IEPs or court ordered documentation or similar.

Just from observing her work life balance as a spouse (and please do not quote me hard and fast on any of this as IANAPHD) she's booked 4 months out currently and each evaluation, assuming the person doesn't no show and waste the calendar block altogether, would average:

3 to 6 PHD-hours range for testing/administering measures
1 to 3 PHD/Masters(maybe)-hours range for scoring/interpretation
3 to 9 PHD-hours for writing up reports and diagnosing if applicable

So, you do the math but say an client, or insurance, ends up paying $2000 (which I don't think is uncommon but again I'm winging it a bit from various and sundry conversations here), that's potentially $110 dollars an hour gross (not net, so not even getting into running a business costs like facility, staff, billing, malpractice, etc) for a PhD's dedicated time. If it was $500 for that same eval then she'd make $27 dollars an hour or so, gross not net.

I guess I rambled a bit there but what I'm getting at is that if it truly did cost $500, without some sort of other reimbursement, for the vast majority of clients then DrMsEld would be unable to see those clients without closing the doors or having WAY, WAY more private pay clients that would somehow pay more/balance out the ledger to keep the doors open.

Care should be more accessible. I am not arguing against that. I'm not arguing anything actually. I'm just laying down numbers from a related point of view for a firm that is serving their community far, far better than most offices that are, perhaps necessarily, geared more towards private pay clients or cutting corners to make costs lower or their bottom lines have more zeros.
posted by RolandOfEld at 6:34 AM on February 23, 2020 [6 favorites]

Non-Edit abuse Edit: Oh, and I obviously forgot any introductory/intake costs as well as not including ANY face to face time with the patients or their families which is something that DrMsEld does prioritize as understanding the situation and options is a huge part of her job as someone diagnosing / treating a client. So, my above numbers are even more generous than they should be, perhaps by a decent bit.
posted by RolandOfEld at 6:36 AM on February 23, 2020 [1 favorite]

But beyond that, is there a 'now that we know, this is what we can do about it'?

In case this hasn't been covered:

1. It isn't something you "do something about." People with ASD diagnoses do not need to be fixed. ASDs do not need to be fixed.

2. A diagnosis is helpful in that it may qualify you for the few services that exist; for example, Occupational Therapy can be useful in helping some people with ASD navigate more comfortably in the world if that's an issue for them.

(Spoiler alert: OT probably isn't what you think it is.)

3. For those with the employment privilege that allows it, it is MINDBENDINGLY HELPFUL to be validated by a diagnosis so you can insist your fucking company provide some fucking neurodiversity training across your org so your fucking manager stops telling you to stop playing with your fucking phone in meetings when you are literally JUST TRYING TO LISTEN, KAREN.
posted by DarlingBri at 7:10 AM on February 23, 2020 [13 favorites]

3. For those with the employment privilege that allows it, it is MINDBENDINGLY HELPFUL to be validated by a diagnosis so you can insist your fucking company provide some fucking neurodiversity training across your org so your fucking manager stops telling you to stop playing with your fucking phone in meetings when you are literally JUST TRYING TO LISTEN, KAREN.

This. Holy shit this. I am a top performer in my department and always have been but my performance evals are always "can't stay off phone" and even if I explain that it's a fidget thing they still don't care. It doesn't matter how many times people are rude to me, talk over me, cross my boundaries, waste my time, or disregard meeting schedules or deadlines or generally are awful and inconsiderate but if I touch my phone once while someone is talking because it helps me to listen it's the greatest travesty known to mankind and I don't deserve this job or any job ever again.
posted by Young Kullervo at 8:36 AM on February 23, 2020 [14 favorites]

This would be reassuring, except for the fact that if you're wrong about the self-diagnosis, then you're not autistic, and hence not necessarily generally accurate at self-diagnosis. Logic strikes again.

Ah... Not necessarily. What's being said is that people who present themselves with a self diagnosis of autism are generally diagnosed with autism (i.e., they are "correct" in this self diagnosis). That does not mean that only the people who are correct are good at guessing. It means that the people who guess that they are autistic are usually correct.

Logic!
posted by sciatrix at 12:09 PM on February 23, 2020 [6 favorites]

Thank you for the article. I'm understand fully the benefit of feeling validated, from getting formally diagnosed.It's good that the author went into detail about the practical side, as in what kind of resources were available to her before and after diagnosis, as that is decidedly not the same for each person. I'm privileged in that I have access to pretty good mental health resources, thanks to my insurance, but my access is completely independent of whether I'm diagnosed, and to maintain my privileged position, it's best if I don't put things on paper. YMMV
posted by ocschwar at 8:34 PM on February 23, 2020 [1 favorite]