My starting point this time around has been YouTube. Web search is a crapshoot these days, so I was hoping to find videos that are neither infantilizing nor a bullet-point list of “you might be autistic if” (and I specified midlife diagnosis, yielding results about kids and teens), but sourced so I can do further reading.

First complaint: Cut the fucking new-age “soothing” music and talk to me like I’m a functioning adult, instead of using diagrams a competent 5-year-old can understand. The last thing I need is to be patronized while trying to expand my understanding.

Second complaint: Making things a circular package deal (if you do X, you must also do Y and Z [already false], which explains why you do X [that’s handled with RAA]).

Third complaint: Excessive use of domain-specific terminology (e.g., “stimming,” “soothing”) instead of plain English. That’s fine for a seminar, but all it does for me is hit me over the head that these are terms I should use and cherish. Fuck that.

Fourth complaint: Assuming I can’t possibly be anything other than a complete mess (basically a combo of the first and second) if multiple people (most recently this weekend) have independently told me I’m clearly on the spectrum (all in the burner scene/commune members, but at different times – apparently, neurodivergence is wildly overrepresented in the circles I now run in).

I don’t need to be told I’m not broken. I’ve been surviving for 47 years with minor excursions, I’ve been married twice and had a career for two decades, and I don’t have a particular issue making friends if someone specific seems interesting. Do I have a strong distrust for authority and systems I don’t have direct control over? Sure. But no small part of that is decades of life experience with systems and authority failing to uphold their end of the bargain (“work hard, and you’ll get ahead”) while I’m nonetheless expected to expend time and money for no discernible benefit.

What I’m looking for is an overview geared toward the curious, not some sort of cheerleader who thinks I can’t use my words.

Just to be abundantly clear, I’m soliciting links to resources that would avoid these issues.

  • TehPers ( TehPers@beehaw.org ) 
    link
    fedilink
    English
    arrow-up
    4
    ·
    8 hours ago

    If you’re looking for resources for Autism (which I’m guessing from context), most resources will be geared around diagnosing children because more research has been done in that area. Even for adults, specialists often use your childhood as one of the factors to determine whether to diagnose you. That might explain some of the infantilization you’re feeling.

    Third complaint: Excessive use of domain-specific terminology (e.g., “stimming,” “soothing”) instead of plain English. That’s fine for a seminar, but all it does for me is hit me over the head that these are terms I should use and cherish. Fuck that.

    I’m curious what terms you’d prefer here. For example, “stimming” is the term that describes a category of repetitive behaviors. It’s not about cherishing the terms, it’s about using precise terminology.

    • Powderhorn ( Powderhorn@beehaw.org ) OP
      link
      fedilink
      English
      arrow-up
      2
      ·
      7 hours ago

      I have a visceral reaction to such terms because they’re used with pride by content creators. So if I don’t? I’m not being understanding or welcoming; I am the enemy. Do I have repetitive habits? A few … if I’m packing cigarettes, it’s 9 or 13 times. Not for any reason, just muscle memory; not a compulsion. I’m pretty sure just about anyone has done something while waiting, annoyed or bored like twirling a pencil or tapping a foot. I still rub the ears of my stuffed Snoopy while falling asleep, and sometimes subconsciously during the day.

      My irritation is this seeming excitement ready to call that all “stimming” and wanting to talk about how they “stim.” It’s reductionist and brings a whole bunch of ordinary behaviour under the umbrella of an in-group term. Not a great look for those of us who aren’t like that – and it makes the visible face look pretty fucking juvenile.

      Because apparently I’m the first adult to have it pointed out that I’m neurodivergent. These videos are somehow a meta insult. “Here’s what’s wrong with you that you don’t fit into society. Now, here’s what wrong with you that you don’t conform to our words. Act like one of us or fuck off.”

      • My irritation is this seeming excitement ready to call that all “stimming” and wanting to talk about how they “stim.” It’s reductionist and brings a whole bunch of ordinary behaviour under the umbrella of an in-group term. Not a great look for those of us who aren’t like that – and it makes the visible face look pretty fucking juvenile.

        I’m just going to be blunt: these videos aren’t for you. Just stop watching them, there are more clinical options if that’s your preference.

        Late diagnosis is such a fucking trip. I’m still going through the processing of the professional diagnosis one year later, and currently I’m watching my husband going through the ADHD-meds-unleashed-the-autism like 3 years after I went through it. Two anecdotes make a trend, right? So I’m going to do some projecting.

        No one ever really told me I was weird, at least not in a way I understood. (My therapist laughed when I said I wasn’t bullied, if that’s any context). I always knew I was weird, but I had no idea how much about myself I had changed to fit in. I still haven’t really read my full diagnosis report but imagine being told, in medical documentation, that you sit weird. At 40.

        Like you, I’m pretty text book successful. I’m married, I have a successful professional career, I’ve written text book chapters in my field (no, it’s not paid lol), etc. If no one has clued me in on my weird sitting, what the fuck else did I miss? Am I actually horrible and no one has lost their temper yet so their hints are too subtle for me to pick up on?

        So I start the stages of grief. I’m probably in bargaining or depression rn. Denial was hard because I truly hate being autistic. I don’t hate my autistic traits, I hate that it’s pathologized.

        Unmasking all the things I didn’t know I was masking fucking sucks. I don’t have the terminology to explain to people. People make a lot of assumptions and I’m too exhausted to try and set the record straight.

        Whether you believe that I’m full of shit about the journey of exploring autism as an older person or not, I do want to point out that some people, especially current or recent youths, remember being pressured (directly) to hide their autistic traits. These videos are to help undo the learned shame and signal that it is safe to be themselves and to encourage people to be themselves.

        When I say it’s not about you I mean that very literally. They aren’t saying you don’t belong. They are trying to create an environment where these things are normalized so people who do have been shamed and excluded for their “normal” behavior can just exist in peace for a few minutes.

        “Autism is a spectrum” isn’t necessarily about severity, but also in expression. Sensory sensitivity is pretty well known, low sensory environments exist in some public places. But sensory seeking is also a thing! I’m more on that side for example.

        Anyways, don’t over think it. Find content that is easier to use and move on. Good luck.

      • Everyone has trouble doing a thing sometimes.

        That event is vastly more frequent for people with ADHD.

        Everyone taps a foot or twirls a pencil sometimes. People with autism tend to do so far more often, and in many cases it is relevant to their mental health.

        If something doesn’t apply to you, it doesn’t apply, there’s no call to be this upset about it.

      • TehPers ( TehPers@beehaw.org ) 
        link
        fedilink
        English
        arrow-up
        2
        ·
        7 hours ago

        So if I don’t? I’m not being understanding or welcoming; I am the enemy.

        I don’t know who said this to you, but I don’t think it was anyone in this thread, was it? You can use whatever terms you want. It just happens that “stimming” exactly describes the behavior.

        Do I have repetitive habits? A few … if I’m packing cigarettes, it’s 9 or 13 times. Not for any reason, just muscle memory; not a compulsion. I’m pretty sure just about anyone has done something while waiting, annoyed or bored like twirling a pencil or tapping a foot. I still rub the ears of my stuffed Snoopy while falling asleep, and sometimes subconsciously during the day.

        This wouldn’t be stimming, then. Stimming is more of a compulsion than just repetition. It helps someone feel more comfortable, especially when feeling sensory overload. A common type of stim I’ve seen is “shaking maracas” (as we call it, or shaking your hands). This isn’t a typical habit, but rather a necessity to relieve discomfort or anxiety.

        Because apparently I’m the first adult to have it pointed out that I’m neurodivergent.

        I’m confused by this. For what it’s worth, I was diagnosed literally last month, and I’m an adult. I was pointing out that a lot of autism material is directed toward working with and diagnosing children because diagnosis of adults is a much more recent thing.

        I can’t speak for the videos themselves because I don’t know what videos you were watching. If they were toxic or unhelpful, then try some other resources. It’s not supposed to be some fancy “club” or in-group or whatever. If someone’s acting like it is, then they’re not worth your time to listen to.

  • You might find Dr. Neff’s website (Neurodivergent Insights) slightly more palatable.

    https://neurodivergentinsights.com/misdiagnosismonday/ could be a good start if you’re looking to actually understand all the different conditions and their overlaps.

    Otherwise she has a free blog on the site with dozens of articles (to the extent where it is now a bit overwhelming to try to find something!). https://neurodivergentinsights.com/resource-overview/

  • bitteroldcoot ( bitteroldcoot@piefed.social ) 
    link
    fedilink
    English
    arrow-up
    1
    ·
    10 hours ago

    Try brave ai.

    Ask for web sites with citations and links.

    You will have to wrestle the information out of it and challenge everything it says, but much like doing a standard web search there is an art to getting god info out of these monsters.

    Or use perplexity.

    • Powderhorn ( Powderhorn@beehaw.org ) OP
      link
      fedilink
      English
      arrow-up
      1
      ·
      8 hours ago

      I asked Mistral, and the first round was completely ASD-centric. After pointing out this is exactly the sort of flattening I wish to avoid, I got a different set of responses.

      Here’s the first for anyone curious. And if you’re irritated by the malformed glyphs – as I initially was – those are ligatures (fi, fl) that should have been handled by a script.