For the Neurodivergent Folks

The place I’m getting my evaluation is specifically for neurodiverse people and they make a big deal about all their staff being neurodivergent and they identify as “neuro-affirming.”

I went into it a little nervous. But actually it’s been great! I don’t have to explain anything to my therapist. For once someone’s explaining shit to me that I never even thought about. And I was afraid there would be a lot of toxic positivity but it hasn’t been like that at all.

It’s hard to find people who actually know their stuff, so it was a relief to just feel understood immediately.

The first therapy they threw me at was kinda terrible, they were crisis counselors, and I guess I was in a crisis at the time. But they were frustrating because they just wouldn’t listen. I mean, they would sit there and let me speak, but when they replied, it was as if we were simply speaking different languages.

It took a bit of shuffling, but the place I’m at now specializes in 2E kids in emotionally neglectful homes (the head of the practice has actually written a couple books on it), so yeah, they understand me better than I understand myself. I spent most of my life trying to get people to understand me, and they can often read my mind before I even know it. It was kinda weird, but in a good way, once I got used to it.

Most of their practice is aimed at teens and younger adults, but there’s a few older people there, too.

Positivity is nice in a world where it is in limited supply. I mean, getting validation for the accomplishments and work I have done does help. But they are also challenging, as there was a lot of baggage that I thought essential to my being that was hard to let go of. I did a lot of crying and yelling that I’m not proud of, but unlike almost anyone else that had seen under the mask, they didn’t attack or run away screaming.

And when the drunk racoon finally came out to dance, they danced with it.

It’s a group of people who are willing to spend a weekend living in cabins without electricity or running water, all so they can hang out and play roleplaying games and board games with extremely complicated rules. So in terms of self-selection, yeah?

In my head, neurodiversity looks a bit like a sandspur: there’s a core, but there’s also a million directions that you can spike out from the core. Some folks spike out in a lot of directions, some in very few directions. It’s a hundred-dimensional spectrum. And sometimes it’s amazing and sometimes it’s debilitating, and the balance between oversimplifying things and complicating them so much that patterns and commonalities disappear is a very tricky balance to find.

Mostly, though, I’m reading this thread and learning a lot from it. For example:

I did not know this, or the rest of the info in that post. Thank you!

I’m sorry that executive function is falling apart. That sounds really overwhelming.

I love you Spice, but your pro-tip: “the less you say the smarter you seem” hasn’t worked out great for me.

I don’t speak, often or easily.
I sense most people think I’m mentality disabled.
My teachers knew I was in there by tests and papers. Didn’t stop them from flunking me out of speech and debate classes. The administration/counselors knew I had a speech impediment so I was eventually excused from those class credits.

Nothing I can do about it at this point.
The lecture tour peeps ain’t looking for me or what I might could expound on.

Nothing more horrible than classmates writing “deaf and dumb” on your locker door with sharpie. I was neither.
I carried all my books from that day forward. I still have a shoulder pain from it.

College was real fun.
Teaching my kids words was a joke.
They did learn ASL early.
Asking for help for myself has never ever happened.
At the moment my right hand is in a cast.
So everyone is looking at my text answers standing in front of me.

My life is effing stoooopid! Let me tell you.
But, yours? Girl, how are you coping?

Stay positive.

That’s true for me too. There’s a much bigger overlap in interests compared to when I was at school and all the girls were talking about boy bands and fashion and such, and I never had anything to contribute. It does make small talk much easier, though I still suffer from not having much interest in popular culture like TV shows, bands etc, ironically especially in nerdier circles.

Trying to learn this seems doable and would be pretty useful.

The situation I was thinking about is the opposite, where someone (sometimes more than one person) is more peripheral to the group and tends to be ignored. Unfortunately, I think this can be self-reinforcing, as if you don’t say much then people don’t expect you to speak and pay less attention to any signals that you might have something to say.

The only reason I would have liked to have learned all these rules of social interaction is so I could help my daughter. She’s struggling with making friends at school, and I wish I could give her better advice. But I don’t know how 5 year olds talk to each other! I don’t even know what’s normal, since I don’t have any other children. I’d say she’s having more problems making friends than I did at her age, which is worrying, but I can hardly get her diagnosed with something just based on that, and I don’t know if there is any help available for - so far - mild issues.

Yeah, this is my experience too; if someone doesn’t say much, other people tend to think they are boring rather than smart. And this isn’t just myself. I know there’s a trope of ‘wise person who doesn’t say much but everyone stops and listens when they do’, but I’ve never seen it in real life. Rather, when the quiet person does try to speak, they get talked over by the loud ones.

There is a discussion on autism on the radio now. It’s related to the claim by TV presenter Greg Wallace, who is subject to a considerable number of allegations about “inappropriate behaviour”. He has claimed that it is due to his autism.

Wallace said he had been hired “as the cheeky greengrocer. A real person with warmth, character, rough edges and all”.

The majority of the complaints relate to inappropriate sexual comments, while 11 women accuse him of inappropriate sexual behaviour, such as groping and touching.

There has been a backlash from Autism charities and on the radio, several autistic people phoned in, saying that Wallace has done them a great disservice.

I think the inverse of this is more true. The actual situation you described has a whole bunch of caveats attached to it. But when someone is talking all the time, people tend to tone out. Oftentimes, others will let that individual dominate a meeting because constantly having to interrupt the same person to get a word in edgewise gets old.

But this illustrates a key point in that a lot of these communication subtleties that are being discussed in this thread are things that Neurotypical folks are not very good at, either. People in general tend to be terrible communicators, but no one wants to admit it. Many of the struggles that ASD folks have with these conversations involves communicating with other folks who aren’t very good at communicating, either, and most ASD folks do not have the tools they need to tell the difference.

I was wrong! According to the book I’m reading,Unmasking Autism, “neurodivergent” started in 1999 by a lady named Judith Singer to describe her relatives who were clearly “different” but didn’t fit a specific diagnosis. Neurotribes seems to have popularized that term but it far predated the book.

Unmasking Autism is OK so far. I don’t relate to all of it but that’s where ADHD throws a wrench in things. For example, he categorically declares autistics as “bottom up” thinkers who start with details and build their ideas upward. This is true for my writing but not much else. I’m a very high level conceptual thinker, I’m particularly interested in how large systems work and how they can be made more effective. I’m also likely to see parallels between apparently disparate fields. I would have been great at comparative history or literature. This is more of an ADHD thing.

My husband once showed me a mind map and said, “my brain is like this.” I said, “Now imagine every node is connected to every other node and that’s how my brain is.”

I read recently that with the prevailing research, the next DSM will probably have ADHD + autism as a separate disorder. I have not yet verified this, but it makes sense.

This indicates that you’re making one or more assumptions:

  • The diagnosis model is so weak as to apply to anyone, and all it takes is asking the right counselor (1 out of 5? 1 out of 10?) and anyone can get a diagnosis for anything.
  • Counselors themselves are incompetent or falsifying (perhaps unintentionally) diagnoses. The guidelines are correct, but counselors are on the whole unable or unwilling to adhere to them.

As @Left_Hand_of_Dorkness says, this group of 50 is not a representative sample of the general population. In my experience, certain kinds of play or interaction appeal to folks with certain kind of wiring/chemistry. It’s not a 1:1 mapping, but the fact (making this fact up) that a group of LARPers (live action roll playing) might be more likely to contain a high percentage of neurodivergent folks doesn’t mean that neurodivergency is just another word for “normal”, it means that neurodivergency manifests in visible and predictable ways.

Sincere question: who cares if it cannot be said about “every single person”? No system works perfectly. Why spend energy worrying about the fringes?

This is the same kind of “someone somewhere might be cheating” concern that is the foundation of over-reactions like defunding medicare, building prisons for Hispanics and sending some to prisons in other countries. If waste, fraud and abuse is happening somewhere, it means the whole thing should be blown up and we’ll all be better off.

So what if some people think they are neurodivergent (or ADHD or autistic) who aren’t? There are also (and always have been) people who ARE those things who didn’t know about it. Why are you more concerned with the former than the latter? And I ask that without snark or judgement- this is the question I ask myself when I get skeptical about this topic or other social issues. Very little in life is black and white. There will always be outliers, inaccuracies, deceptions, self-deceptions, confusion, and contradiction. For true growth and understanding, the important question is “why do some of these inaccuracies cause me to speak out, while others do not?”

You called this “semi-facetious,” but for me it’s a serious insight. (This whole thread has been helpful, so thanks to all.)

Yeah, I think this is very doable (and very useful).

Oh, I see. Yeah, that can definitely happen. In my experience it is not usually malicious/intentional (though I suppose it could be in the kind of environment where everyone is jockeying for social position – I tend to try to stay far away from those kinds of environments), but like you say is self-reinforcing people won’t pay as much attention to the signaling of the quiet people.

It is also the case that some people tend to be a little more “aggressive” with their speech than others, so e.g. in the above discussion about looking for good slight-pauses in the conversation, if you have a few people who will aggressively jump on those pauses a bit sooner than anyone else – or just talk over other people – the ones who are a little less aggressive about it will get shut out. (In many contexts I am more quiet, but because I come from a family-of-origin of interrupters, when I’m with other people I’m close with who are also interrupter-types, I can very much be that way myself. I have two friends, one of whom is also an aggressive interrupter and the other of whom really is not, and when the three of us get together I’ve learned (after she had to speak sharply to us a couple of times about it) the two of us “interrupters” have to really tone it down for our third friend and consciously make space for her to chime in, otherwise she never gets a word in at all because she won’t constantly talk over the other person like the other two of us can do.)

(On the flip side, I happen to know people with mad advanced social skills who will often notice things like when a person (or people) in a group isn’t contributing as much and try to draw them out a bit, noticing when they might have responses but be too shy to say, and asking for their opinion, which I think is amazing and I’m trying to learn how to do that.)

Unfortunately I can’t help you so much here, as 5-year-old social dynamics are a whole other thing that I have much less experience with than one would think – as my 5-year-old girl refused to talk to anyone at all, and my 5-year-old boy didn’t really talk that much either, but just went along with whatever everyone else said (which has its own issues, but I guess did make him popular as a 5-year-old). Do you think it is because she’s interested in different things than the other 5-year-olds, or because e.g. she doesn’t know how to play with them?

In my area there is a program that does peer support for kids. My daughter also had an excellent (though expensive) therapist over zoom for a couple of years, though I don’t think she could have handled zoom sessions at age 5. You might ask your pediatrician (assuming you have a decent one) about your concerns and ask what kind of resources are in your area, maybe also your child’s teacher – my child’s teachers didn’t always have good specific resources to share, but they did usually have good suggestions as to the type of things I should be looking into (and it was because of one her teachers that we had her tested for ASD at all, and because of another of her teachers that we had her see the therapist).

Brilliantly put. This is SUCH an important observation, and is relevant to most of the current threads in P & E, as well as quite a few in the Pit.

I will admit that I have a lot of mental rigidity in the area of psychology, which is one of my main interests. While I recognize the imperfections inherent in the system, I’ve always been very, “Is this based on evidence? Are these reliable tools? Is the methodology sound?” This mindset was influenced by my husband who is a behavioral psychologist and by my own bad experiences with therapists who didn’t use evidence-based methodologies.

So the whole phenomenon of self-diagnosis initially drove me apeshit. I had a hard time with the lack of intellectual rigour on, say, YouTube. Indeed, I sought a diagnosis specifically because I don’t want to claim someone else’s identity. And I don’t like not knowing things. I don’t like gaps in my information. I want it all.

Then the person who was assigned to me was God forbid a psychodynamic therapist. But she specializes in neurodivergence and trauma so she probably is going to know more than me about the intersection of ADHD, autism and PTSD in women. I really couldn’t find anyone else with that specialization.

But I was on a wait list. I didn’t have immediate access to help figuring all this stuff out, but I had urgent issues in my life needing attention.

And that’s when I really began to lighten up a little about self-dx and these online spaces. I was so stressed about this impending evaluation I needed somewhere to put that angst. And it was a relief to be somewhere where my issues were taken seriously and understood, and to try to learn about ways to deal with it. Yes there are occasionally people who are clearly talking out of their ass, but you can get that just as easily with actual therapists.

Which ultimately led me to the conclusion that these places can be helpful or in the very least pretty harmless. While I was embarrassed to reach out about an evaluation, it wasn’t a foreign experience for me because in the last twenty years, I’ve located and engaged in therapy with a dozen people at least. I know the drill. But not everyone has that level of comfort, or the knowledge of what to look for, or the resources that I have, and if these spaces are all they get or all they need, who am I to say they have to follow my rules?

Yes, this is growth for me.

I have, of course, been consumed by the fear that I filled out the screening tools incorrectly. I told my husband maybe I should go through them with her, point by point, just to be sure. He said, “No.” And anyway I filled it out conservatively so if I did screw it up, it would err on the side of more autistic traits. But I found the presentation maddening, the options were “True” “Never True” “True when I was younger than 16” and “True now and when younger than 16” and “True only now.”

My options are either “true” or “never true?” What if it applies 80% of the time, can I categorically label that “true?” even though it’s false 20% of the time? What if it’s true exactly half the time? Why this forced binary? And what if I can’t remember how I was as a child for certain things?

I don’t deal well with uncertainty.

Relevant article

https://www.smithsonianmag.com/science-nature/why-are-so-many-more-women-being-diagnosed-with-adhd-180986909/

Heh. I have the same response in this and other areas. It’s part of why I’ve had a hard time participating in groups centered around change influence or activism. So much decision making and stance-taking based on personal feelings, imprecise questions, narrow analysis, lack of data, unquestioned assumptions, and appeals to authority who themselves are making leaps between what the data says and what truths can be validated by that data.

I’ve loosened up about this a little in recent years, as I think more about how lack of action is itself action, and no choices are ever perfect ones. In this case, why does the prospect of an over-diagnosed population provoke different emotions in me than an under-diagnosed one? Why might I get angry at someone who I suspect is claiming ADHD inaccurately, while I don’t get angry at someone who experiences ADHD but does not claim the diagnosis?

Re: using screening tools incorrectly… ho boy, does that ring true for me. Not for ADHD/Autism, as I haven’t sought diagnosis yet, but any health/mental health screening questionnaire (or personality screenings) I’ve had to answer is a giant game of “what exactly do you mean by that”, “how can this be yes/no true/false?” and “can I answer this with an ‘it depends’?”. At this point, if I understand the purpose of the questions I’m mostly good at just answering the “right” answer that will give the results they are looking for (I’m not in a mental health crisis, so I’ll answer questions about sadness/depression in a way that doesn’t trigger concern, even if I feel like my answer is inaccurate).

I haven’t quite trained myself to answer inside the box on the question “how many drinks do you have in a week”… as much as I try to make something up, I invariably take a whole paragraph to say, “well, it depends, some weeks I don’t drink anything, other weeks I’ll have a drink or two on 3-4 nights of the week. But if we’re going out I might get a cocktail and share a bottle of wine, but I probably drink more than half the bottle of wine. But we don’t do that very often. But it really depends. I guess maybe 3 drinks a week on average? But there are a lot of weeks when I don’t drink at all. And some when I do. I don’t know.”

In fact, I think part of why I haven’t sought diagnosis is that the idea of answering a screening accurately feels incredibly overwhelming.

At least with this therapist she’s been collecting information about me just in the normal course of talking about things. She sent me the screeners this week to confirm what she already was thinking. I scored a 97 on the RAADS-R and the threshold for autism is 65. It’s not the highest score in the world but there are questions that seem to think having empathy and wanting to help people rules out autism. That’s just dumb. Then on the CAT-Q, my camouflaging traits score of 138 is above the mean for autistic women. Which I am given to understand means I will probably score lower on other tests.

But even if I did the RAADS-R wrong, I’m still above the threshold. So it probably doesn’t matter.

I just feel like I’ve had myself in an iron grip for so long I have no idea what I actually would prefer to be like. At times I feel like I can’t mask at all - so I tend to avoid people when I’m feeling strong emotions. But other times I feel like I’m policing my own behavior even when I’m just home alone. The best way I can describe is “social hypervigilance.”

And apparently that’s a major driver of burnout.

I wanted to see how that differentiates from social anxiety, because I definitely have social anxiety which also includes social hypervigilance, and I think the devil in those details is the restricted and repetitive interests/behavior, sensory issues and other things I experience that have nothing to do with social anxiety. And this therapist has been very skilled at sorting out the ADHD traits from potential autistic traits, so I do think we’re on the right track.

I’ve long toyed with the idea that I am somewhere “on the spectrum”. So many things resonate:

The comfort with routines and schedules. It’s why I gravitate so much to a fitness lifestyle: It’s an excuse to eat the same foods each day, to sleep the same time each night, and to do the same workouts consistently week after week.

When I’m not in my predictable routine, I’m completely listless. It’s like I don’t know how to eat like a regular person, or get just a little bit of activity during the day. I’ll skip breakfast, have fast food sometime in the early afternoon, then veg out on the couch at night with some sort of candy.

But if you put me on a regimented schedule (eat at 8:30, 11:30, 2:30, 5:30, workout from 6:30-7:30, eat again at 8 and 9:30), I’m in my comfort zone.

Hell, my favorite part of the week is Saturday morning, when I do my weekend chores. So, so predictable.

The social awkwardness There are a lot of women who, in retrospect, showed romantic interest in me, and who I would have been thrilled to date, who’s signs I totally misunderstood. I think flirtation seemed like people were mocking me.

Part and parcel to that was a strong discomfort with eye contact. I think that accounted for a lot of my social struggles: when somebody would smile at me, I’d respond with studied indifference, pretending I didn’t see them.

I definitely developed social skills by observation, and can totally relate to the idea of masking. At work, when I have to meet with a client, I call it being “professionally charming”, and I have a usual spiel that I use. In court, I’m performing a role; especially in trial, it’s like theatre. But I’m certainly not comfortable - or particularly adept - about discussing myself, or my inner thoughts and feelings, with others.

When I see references to neurodivergent, other things resonate as well. Anxiety and depression? In spades. Gifted child, but prone to procrastination borne out of perfectionism. Precocious reader, and talented writer, happy for the isolation of a book. Relate better to animals than people. Love reading the instruction manual. And maps! Struggle with mental blocks that make some work nearly impossible to complete. Asked for a dictionary as a Christmas present when I was 12.

So; maybe?

Then again, I also once read that early childhood trauma can account for some of these things. Needing structure and struggling with interpersonal relationships might reflect abuse.

And I was sexually abused when I was about 3 or 4, by a neighbor just a few years older (who himself, I am certain, was being molested at home). The was around the time my parents split up, and my dad left the house.

So, maybe not autistic after all.

But I’ll cop to neurodivergence.

As seen on a t-shirt

Ok, that’s not quite true. But it’s a nice sentiment.

I recently learned that autistic people are more likely to be sexually abused because, well, they’re easier to manipulate. It’s one reason this has hit me so hard this week. She’s been having me write about my trauma in the middle of all this and she keeps coming back to my writing and saying, “This right here? Autism.”

I wrote a whole essay I shared with her from 2017 about how I felt like I couldn’t trust my own judgement after I was abused.

And now I’m reading it and she’s pointing to it and I am beginning to see, “Oh, this experience was totally informed by autism.” How it happened, how I experienced it, how I dealt with it, how I tried (and failed) to end it, and how much support I lost afterward because I struggled with boundaries and social appropriateness.

Which is heavy shit.

And then the journaling she had me do this week I basically wrote, “I don’t know how to communicate what this was like except through my fiction.” I was supposed to be talking about my own experience but I kept going back to my novel. It’s like I can’t access certain things emotionally except through my fiction writing.

It’s been a lot to take in.

If you’re curious you could fill out the screener, RAADS-R. The whole website is an awesome resource, and I like that the validity and reliability of each test is discussed, along with explanations and critiques. This is not a diagnostic tool but a screening tool. I think it’s a good jumping off point for people to determine whether they want to get a full evaluation.

For people who think they have autistic traits but might mask a lot, the CAT-Q. This is the one most associated with autism in women. A higher score on this test might result in lower scores on more traditional measures.

Generally a specialist would use these tools along with others as well as clinical observations and information gathering in a more informal setting. Ideally they would do a differential diagnosis, meaning they would look at the constellation of symptoms and determine whether they can be explained by existing diagnoses, past history of trauma, or alternative diagnoses and then determine the best fit based on that assessment.