I pit the belief system that says that autism isn't bad

The BBQ Pit
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FWIW that’s the messaging I try to encourage in my patient families. The way their brain works that’s the shorthand of autism, to the degree inaccurately communicates it (which is variable) is an important part of who they are but they are so much more than that. The longhand version is a wonderful complicated mix of strengths and weaknesses some of which are completely unrelated to that label. Like all of us.

But what does he then actually know that he didn’t know before? Seriously. That he can be described by that word that also describes people very different than him?

You don’t necessarily get better from depression by doing things. Some need to do that exact structuring bit. One can be overwhelmed and burnt out with having an autism identity.

My take is that the individual gets treated, not the label, and my read of the research is that the label is a shorthand for the long version. The shorthand is of only limited utility. The differences between two people with the same shorthand are huge and vital.

The shorthand as a label is also NOT static. People change, grow, and the label that fits best at point A may never longer fit at point B. There needs to be an openness to diagnostic fluidity. Building an identity around the label, a community around it, may get in the way of that.

We have discussed previously but the data does show that there is commonly a sense of relief to receiving a label, initially. But longer term it is rarely of much value and can have negative consequences as well. Some start to act the part that the label says they should be.

It is more that the diagnosis lumps disparate entities together under the same umbrella. But splitting isn’t always putting same same in the same buckets, so no approach is perfect.

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I definitely don’t have a dog in this fight, but IMO this:

describes the ideal, but often not the reality. Which is a shame and a waste of a lot of human potential. And care resources.

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I can’t point to anything you’re saying and say that it’s wrong, but I still feel there’s a whole piece of this that is missing. You seem to have a firmer grasp on the diagnostic piece of this than I do (I would certainly hope so!) and how to evaluate the research.

The philosophical difference is, I think, largely an experiential one, and I don’t know how to bridge that gap because it’s not academic. I have decades of experience being depressed, being anxious, and having PTSD, at times to the point of complete debilitation. I have decades of experience as a consumer of mental health services. I have experienced so many different types of therapy, evidence-based and otherwise. I’ve had good therapists and bad therapists. I’ve tried a wide range of psychiatric medications. And I’ve had ADHD my whole life and the experience of being diagnosed later in life.

What I have experienced over the course of my life, is that labels are pretty darned useful. When I was drowning, the only way I could get my head above water was to look at the label, find the evidence-based treatment(s) for that label, and then go do the therapies recommended for that label. This is how I got better, systematically. This has brought me from the darkest years of my college days when it was difficult to even get out of bed and I had to withdraw from school for a year to painstakingly learn how to function, to the person I am now, one with an incredible amount of resilience and who is now registering as subclinical for a lot of those initial diagnoses.

To be continued, I hit post on accident…

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Well, in my case, I’m high-functioning enough that knowing the label means that I can read the grab bag of symptoms and try to mitigate the applicable ones. And this would have been wonderful for me had this happened when I was 34 yrs old instead of 64 yrs old.

That’s not to say that it’s not work, or 100% effective 100% of the time, but even a 20% improvement would have been good.

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As such, it’s going to be incredibly difficult to convince me that labels aren’t important. Labels are how I crawled my way out of hell.

Likewise, I have experience with different kinds of communities for all of these conditions, from Reddit groups to friends who share my diagnosis. I’ve seen the worst they have to offer and the best. And I think a lot of people want and need to feel like part of the tribe. That people on the fuzzy edges will also join the tribe is inevitable. But there’s something intrinsically valuable about finding people who experience similar challenges to yours. And due to the segmented way the Internet works, it’s a lot harder to find people who share those challenges outside the context of some kind of label.

In my experience, therapists overwhelmingly treat the person and not the label, some of them I think to a detrimental degree. I once received treatment for PTSD at the Center for the Treatment and Study of Anxiety under the direction of Edna Foa, who spearheaded prolonged exposure for PTSD. Even in the highly rigorous, structured, carefully evaluated setting of this clinic, I never felt like I was being treated as anything less than a complex human being. The idea that therapists ignore the complexity of their clients was a very very frequent criticism of CBT and other evidence-based interventions, it came from a time when psychodynamic and other therapists were feeling threatened by the rise of evidence-based psychotherapy, and it doesn’t hold up to scrutiny.

Not only have I seen this play out for my husband, who was discriminated against due to his behavioral science orientation, I’ve seen it expressed by my own graduate school classmates in clinical social work settings, often by people who have never used CBT therapy in a clinical setting and only have a very dim idea of what it is or how it is applied. I’m engaged in CBT therapy right now and know for a fact that’s not how it works.

I think it’s natural when someone is first diagnosed with something for it to consume them (especially ADHD and autism, both of which can lead to hyperfixation.) I haven’t really seen any long-term harm result from this initial obsession. Eventually it all gets integrated into the big complex tangle of who you are. So I don’t necessarily see the newly diagnosed fixation as something that endures.

As for labels resulting in worse behavior, another thing that would explain those results is that once people are diagnosed and connect with other diagnosed people, they learn that they don’t have to mask all the time. So the people closest to them are going to see the real them. And it may look like, “Well suddenly she got diagnosed and now her behavior has changed to fit the diagnosis” but what might be actually happening is that the person no longer feels the need to pretend to be anything other than what they are, especially with those closest to them.

The Internet is full of people experiencing this phenomenon and they find it very frustrating because it’s like their loved ones want to put them back in the box and they don’t want to be in the box anymore.

And in fact, the source of neurodiverse burnout is often caused by the chronic stress of having to pretend to be neurotypical all of the time.

The experiential difference is stark here where you say “well a lot of people experience burnout” because I have extensive experience being myself. I know what depression is like for me. I know what work-related burnout feels like for me. This was qualitatively different from anything I’d experienced in a way that deeply concerned me.

I’m very interested in this subject but please note I am absolutely slammed right now at work, so if I manage to force myself to stay away it’s really only because I have a lot of work to do.

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And the study!

https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2850079

Question Has the genetic risk profile of individuals diagnosed with autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) changed as diagnostic rates have increased?

Findings In this cohort study among 17 071 individuals with incident diagnosis of ASD and 20 111 individuals with incident diagnosis of ADHD, genetic contributions to ASD and ADHD diagnoses weakened over the past 2 decades.

Meaning These results suggest that recent increases in ASD and ADHD diagnoses coincided with a broadening of diagnostic criteria.

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And another thing!

The recent rise in rejection by therapists of the diagnostic framework and the medical model of mental health has given rise to wildly inappropriate and damaging treatment using therapies practitioners pulled out of their asses. There are a whole new class of professionals licensed to perform therapy who have significantly less training and are much more likely actively hostile to the idea of mental health diagnoses. They are tremendously damaging and far more concerning than people who are leaning too hard on the diagnostic framework. This phenomenon belongs firmly in the MAHA camp of anti-intellectual pseudoscience and it is in fact one of these that I asked to evaluate me for autism, but she was so colossally bad at her job, to the point she was making me depressed and I felt worse every time I talked to her, that I left.

The amount of pseudoscience in metal health treatment is staggering, and false beliefs about autism and ADHD are no exception. It would be one thing if we were substituting the DSM with something better but in the majority of cases we appear to be substituting it with harmful bullshit. It’s important to understand that all those teens spreading misinformation about autism on TikTok are getting it from their therapists, who also don’t understand autism.

I must go to bed now.

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So I think it can be helpful to know that “I’m not unique nor am I a bad person for having these traits, this is a catchphrase to describe people some of whom are actually like me.”

Some people don’t care that much about that. (My kid doesn’t seem to, nor do I.) But some do. I remember the day I talked to a kid who went to my kids’ school, just saying hi as you do when you see a kid you know, and they busted out with, “Yesterday my parents told me I was dyslexic.” So of course then we had a conversation about it. The kid was actually so relieved! They’d known they had issues that required them to have a tutor and so on, and it was really quite revelatory to me how happy they were to know that it had a name and that it wasn’t just that they were stupid or that they weren’t working hard enough.

(On the other hand, my kid was diagnosed at age 6, before they were really thinking along those lines, so it’s basically always been something that’s been in the landscape of our family. The kid I talk about above found out at age 10 or 11, which is a little different, I think, than having grown up with it from an early age. Maybe my kid would have cared about it too if they’d been diagnosed at age 11 or 12.)

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We’ve talked about this before, and I’m pretty sure you don’t disagree with this, but I think that it can lead to harm even if it doesn’t always.

I think a kind of harm can come from the consuming nature of it leading to identifying so heavily with it that one spends too much time in echo chambers where all one hears from are people who are like oneself but not like… well, people with different support needs, for example.

I also think that one can start leaning on the labels. I do this myself. I can feel myself wanting to making excuses – “oh, it’s hard for me to call people because I’m autistic.” But on the other hand, if I can change that to “hey look, I can make a script before I call people and that will help me,” then that’s good.

I don’t know what the answer is. I think it’s just got to depend on the person.

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First. Hope you are asleep now and don’t respond for a while because work needs focus! :grinning_face:

Labels are important - as tools. Tools have purposes and they have limitations. A thermometer is tool and knowing that someone has a fever is valuable information; it just is very nonspecific information. Is the fever from a virus, from a bacterial infection, and if so what type? Many of the DSM labels are like that.The same label can be caused by a variety of different neurobiological bases, and the same basic neurobiology can manifest as very different labels.

Labels are not magic words that give us automatic dominion over which we name; I think some folk think of them like that.

Still they are the least poor tool we have right now and at least suggest approaches that are reasonable. I suspect that eventually our understanding of how things work will result in a drastic reworking of the nosology though .

Also. I understand the great value of support from people whose personal experience helps them understand what you are dealing with. The validation that others have been in pretty much your place and get it. “Community”in that sense makes sense to me. But I’m getting a sense that some are using their label as belonging to a club? Another sort of granfalloon. I get the sense that a few are looking to call themselves something because they think being part of the club is cool. And some of them are trying to own the label.

We need our boxes. We need to draw lines for where red stops and purple or pink or lavender begins. Reality though is not necessarily granular.

Pushing the color metaphor: Neurodiversity is akin to the color spindle. Not every point can have its own name, but throwing more region all called red isn’t very helpful either.

Anyway This is a Pit thread. We DO need to appreciate that different than the median is not necessarily a problem; that diversity of brain processing styles is good for the whole! And that it can be a problem.

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The If Books Could Kill podcast recently did an episode on The Body Keeps the Score. Worth a listen!

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I had a friend who got an ADHD diagnosis about 2 years ago, in her mid 40s. Initially, she was looking at getting the diagnosis as an explanation and a framework to help her find new ways of dealing with things she found hard.

By 6 months after diagnosis, it had become an excuse to be crappy to people.

The final straw for me was when she offered to come up and stay with me to help out with a project (putting up a greenhouse, a multi-person job). It was her suggestion, and I’d sent all the instructions before ordering the kit, to confirm that she knew how much work it would be and was sure she’d be up for it. All the replies were enthusiastic, how she was looking forward to the challenge.

Then she arrived, looked at the kit and flatly refused to have anything to do it. Not only that, but she then claimed she hadn’t actually understood what she was offering to do as she didn’t bother reading any of the messages, because she has ADHD. She even claimed I tricked her into coming because I knew she had ADHD so wouldn’t pay attention to what she was agreeing to.

No hint of an apology, just an accusation of being ableist. She then insisted I spent the whole rest of the visit picking fights with me, constantly bringing up her ADHD.

Apparently she’s been like this with everyone. According to her, friendships don’t need to go both ways any more. If she suggests, offers or even promises something, it doesn’t matter, because she has ADHD and doesn’t remember that sort of thing so it’s unfair to expect her to live up to it. The same grace doesn’t apply to anyone else; in fact, she takes it very personally if anyone lets her down even accidentally.

She’s lost almost all her friends since the diagnosis (I barely speak to her any more) because she’s now expecting a free pass on, frankly, being an unapologetically terrible friend.

I have no idea if she’s going to get over this, and how long it’s going to take if so, but it seems to me that she’s thrown out all her social skills and consideration for anyone else under the guise of getting to be ‘the real me’. Instead of helping her find the skills to make things she finds difficult easier, it’s become an excuse to declare them all unimportant, at least socially, and anyone who disagrees is ableist. I’m sure the diagnosis wasn’t the only trigger, things were very stressful for a while, but it’s certainly a factor.

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The tension is between the real relief at “knowing” and the negative self fulfilling prophecy effect. The linked thread a ways back started off with a NYT gift link which contains this:

, after controlling for symptom severity and socio-demographic factors, is that the diagnosed groups did somewhat worse. Young adults who were diagnosed with depression in adolescence had worse depression symptoms later, despite getting treatment; children who had been diagnosed with A.D.H.D. had worse peer relationships, worse self-image and worse emotional well-being.

Often, Dr. O’Connor said, adults feel some regret that they did not receive their diagnosis as children. “But the objective evidence we have suggests that might not actually have been the case,” she said. “They may well have had some benefits to their self-understanding, but they would also have been exposed to more stigma, more negative peer or teacher interactions.”

The results, she said, follow the logic of a self-fulfilling prophecy. Diagnoses set up expectations

I certainly still support treatment though!

Thinking on it more I think the conflict is what perspective we take on neurodiversity: do we consider it as broadening the concept of what is normal into recognition of its various quirky flavors, each with its pluses and minuses? Or are we instead expanding the space of pathology and disability?

I lean to its value of broadening the diversity of normal, but when the same word is used for those who have degrees that are serious pathology, that are major disability, conflict and resentment is unavoidable.And when those who really are a flavor of normal claim disability there is a problem.

IMHO.

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I’ve been depressed since around 2009 and on SSRIs since 2013, with a dosage increase about two months ago. I think that I simply have to accept the fact that, for me, happiness has to be extrinsically generated, not intrinsically. The dosage increase definitely helped.

On another note, after reading much of this thread regarding the autism experiences of others, I will definitely acknowledge that I really don’t have much to complain about except for what I consider to be a stolen, or lost, or compromised, emotional past. That, however, is nothing compared to what others here have referred to.

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It’s a mixed bag with my daughter. She uses her ADHD sometimes as an excuse to not do things, or an explanation for why she didn’t do things (or did something she shouldn’t). As a parent, sometimes I have to walk a tightrope between being understanding and patient with her, and accepting of her struggles because of her ADHD, but at the same time not letting it be an excuse to make bad choices and not learn from her mistakes.

I think like @DSeid said, a label is a tool, and a tool can be good or bad. A screwdriver is great tool for putting together a bookshelf with a bunch of screws. It’s a terrible tool to use to clear earwax out of your ear. A tool is only good if it’s used for the right job and in the right way, otherwise it can be dangerous. And sometimes, you reach for the wrong tool because it’s available and easy, and suffer for it.

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And when you have a hammer everything looks like nail …

I think on the clinician side we fall into that more than we’d like to admit? Yes the kids meet criteria for ADHD, positive scores on Vanderbilt inventories at home and school both … but everyone involved knows what questions need twos and threes … and many involved want the label because then we can use the label as a tool to get services, and likely medication, that will likely help. Or at least can possibly help. At least in the near term. And we really want to be able to help, to do something.

We are most likely to see what we are looking to see. And we are, proverbially, looking for nails.

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I’m reminded of a joke(?) t-shirt I saw in a tourist schlock shop near here:

I’m not autistic.
I’m just an asshole.

There certainly are many people who do just as your soon-to-be-former friend do. Most of us have known one or have FOAF stories about one.

We also know of people at work who are either the boss’s relative or of some certain ethnicity or religion that lets them use that status as plot armor to shirk all day, be jerks, and also be immune from discipline, much less firing.


Switching gears away from diagnoseable problems and just to the tribulations inherent in daily life of what we call neurotypical …

There are sayings to the effect “Family is where they have to take you in.” or “Family is where you can be yourself.” Both of which are IMO at least mildly toxic.

Living with other people long term requires consideration of everyone’s needs and wants and preferences, including, but not exclusively, your own. Whether “living with” means cohabiting or friends or coworkers or mere acquaintances. The closer you are together for the more hours per day, the more, not less, there is need to work with the whole and not be a “rugged individualist” dedicated to the motto “my way or the highway”.

Many people really struggle with that. The idea that innate selfishness or emotional immaturity is its own reward and its own unassailable excuse is simply wrong. We’re a social species. And if you, any you, for any reason, suck at “social”, you’re either going to be alone, or you’re going to be working to overcome your nature every day. Whether that’s actual retraining, or just faking it is up to you.

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This is really great insight for me so I thank you LSLGuy.

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All of that is a great explanation of why things aren’t excuses … but still decent explanations, and occasionally worth extending some grace?

The context it comes up in my world is when kids are falling apart and frankly little shits at home, while are doing just fine at school (“a darling child!”): it is hard work to hold it together in the outside world but they are, with work, doing it; home, they have unconditional love, and all the stress of the day can pour out onto those who will love you no matter what. The confidence in that unconditionality, the ability to discharge it there as a safe place to do it, is what gives them to capacity to endure the day. So really hard for a parent to have to handle but actually proof of the strength of the relationship.

I’d WAG in long term romantic partnerships too, but there it can best endure if there is some turn taking? To each of our best abilities.

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This is true for some aspects. You’re not entitled to screw other people over, and they’re likely to cut you off if you do.

But what’s acceptable public behavior is actually pretty malleable. Sometimes that changes, and sometimes it ought to. We accept that women are entitled to disagree with men in public — or a lot of us do, anyway. If someone needs to use a fidget toy in public, if someone needs alone time, if someone can’t deal with particular noises and needs the printer shut off during a meeting because that particular printer’s making one of those noises — why should people have to try to mask such things?