For the Neurodivergent Folks

Miscellaneous and Personal Stuff I Must Share
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Very interesting thread. To repeat, I’m not at all even implying that folk’s lived experiences are not valid, nor worthy of discussion nor accommodations. There is a very broad spectrum for neuro-divergence

I agree with whomever up thread preferred Aspergers and Autism were separate diagnosis.’ And simplistically it makes a lot of sense to me. Aspergers typically had standard language acquisition or were non-verbal and at say 4 years old suddenly started speaking in complete sentences. ASD typically much later if ever could articulate. A kind of “locked in” syndrome where they have thoughts, needs and wants, and can’t communicate those. Imagine being 5 years old and not being able to communicate that you want to go to Build A Bear in the nearby mall, so bolt out of the house running down the street every chance you get. Or having a mom say “wave Merry Christmas to your friend Serena” because they are non-verbal.

There is a segment of parents that figured out getting an ADHD or ASD diagnosis for their child and a 504 plan gave advantages in school and test taking. Yet, when 1/3 of the elementary school population (in some areas that I personally know of like where my niece’s husband is a principal) has a 504 plan, and the special test taking center is louder and more disruptive than the regular classroom, then that is not a panacea. And there’s a huge difference between a 504 plan and an IEP.

My youngest, at age 18, would go up to complete strangers who were wearing a dress in the grocery store and say out of the blue “you look like a princess!” And the recipient would typically pause for a few seconds, take in the stilted speech, innocence, absolute joie de vivre, posture, and other markers, and reply with a smile and a big thank you. It made both of their days. Just an example as that simple interaction was plenty for dozens of strangers to realize Serena had obvious special needs. Damn, I so miss that girl! :broken_heart:

FWIW, I had an actual ADHD diagnosis at age 62, and Vyvanse is a wonder drug. Wish I had known a few decades ago. It explains a lot, and I still have all sorts of coping mechanism that I’ve used since elementary school (such as writing important things to do today on the back of my hand). Maybe I have too much baggage as part of the suck it up, buttercup generation. Again, no intention of belittling anyone here nor invalidating experiences or perceptions. Peace.

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Glad to hear it.

I haven’t done this, and tbh I doubt I ever will. I don’t have the motivation to take on such a big project, and I don’t feel like I have any attention to spare while interacting with other people to think about all this stuff; I’d be unable to pay attention to what they were saying or forget what I was saying myself.

I’ve always been bad at masking, which is probably one reason I actually got diagnosed. But the advice now is not to mask, which leaves me confused as to the difference between masking (bad) and learning to handle relationships and social interaction better (good).

It’s natural to be unhappy if you have the same need for human connection as everyone else, but other people find you difficult to talk to, annoying, boring, or otherwise not enjoyable to be around, and don’t want any kind of relationship. It’s not surprising the suicide rate is so much higher for people with high functioning autism.

I agree with all this. I think they changed it because it implies a sharp division that doesn’t really exist, but the end points on the spectrum are so different that it’s really misleading to lump them together under the same name. At the very least they need more descriptive terms for levels 1, 2, and 3 so people have a better understanding of what these diagnoses mean.

Something I really struggle with is what to say when someone is visibly upset, or has suffered a bereavement or some other kind of loss. I’m so afraid of saying the wrong thing and making them feel worse, yet it seems awful to do nothing. I really envy people who know what to do in these kinds of situations.

Damn, I could have written this verbatim.

My theories are that either there is some non-verbal signal that you need to give so people recognise when you want to speak, and I’m not giving it. Or else that it’s a social capital thing: if you have a lot of social capital, people will make space for you to speak and defer to you if they also had something to say, whereas if you have little social capital, they expect you to defer and there are very few times it would be appropriate for you to speak. I was hoping one of the people here who have been studying non-verbal communication for decades might know the answer?

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I have found that saying anything about their situation is risky. I usually just nod my head and look down in a sign of empathy. I’ll ask if they need help with anything, and will offer help if I notice they are in need of something.

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The complaint that “now everyone has a diagnosis” seems akin to the attitude that Those People are getting something for nothing, cheating the system, and should just … change themselves. Very common, and frankly it is ugly.

That there is now an understanding that there are brain differences in many people which cause them to have specific difficulties coping with life challenges, that can be mapped in a kind of gradient from completely helpless to nearly invisible to others, is an enormous help to those of us who have always struggled, have always been misinterpreted, have always been blamed for our differentness. The relief of a diagnosis cannot be overestimated.

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I thought there was some value in that article. Sure, it is overwritten. But some aspects of it seemed to match my perception/experiences.

I’m all for people doing whatever it takes for them to be “happier” (imperfect term.) Perhaps one aspect I perceive as the most problematic is the all-to-common failure to differentiate between folk who have relatively mild ASD/anxiety/depression, and the folk who are much more significantly impaired. (Or unpleasant experiences from “trauma.”) Too often I perceive that folk in the former group might be better off working on how they can best function despite that attribute, than focussing on how it limits them. (Poorly phrased.) There is a lot of benefit to be had for some from support groups - IRL or on-line. But for some, such groups might magnify otherwise mild issues.

One of my buddies has twin sons in their 20s w/ Asperger’s. He never expects them to move out from home or have meaningful romantic relationships - but they are both employed fulltime, drive, contribute to the household, and derive their form of enjoyment from life. Personally, I’m not sure why a young person who can drive, attend and excel at college, work part-time, enjoy various social relationships would be considered disabled - but I see folk like that claiming disability at least weekly. From my perspective, the difference between such folk and the severely autistic is pretty damned obvious - and meaningful.

I often hear neurodivergent folk comment on how difficult aspects of life are for them. Show of hands - who out there finds life EASY?! :smiley:

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It is, of course, necessary to figure out how something limits you before you can figure out how to best function with that attribute.

When I was first diagnosed with ADHD I felt some measure of relief that my problem was not poor character. I then had to kind of review my life and process how undiagnosed ADHD informed various Bad Things that happened. It was particularly difficult in realizing how it informed my abuse as a child, as well as my struggles in college, which were so severe I had to take a year off. I then sought coaching to figure out how to manage my executive function problems. I then lost interest for a while. That’s kind of a normal cycle for a diagnosis, especially a diagnosis where “hyperfixation” is a core attribute.

I recently started being interested in my ADHD again because perimenopause has made my ADHD so bad at times that one day, I actually looked up “early onset dementia.” Hormonal changes have kicked my impairment from mild to moderate to moderate to severe. This requires a completely different set of tools to manage.

The irony here is that you seem to want people to not be limited by their conditions, but by discouraging people from talking about it, you deny them the possibility of ever learning how to manage it.

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No - not at all. Please do not interpret my statements as suggesting that I wish/expect one thing of all people.

With SOME people, I do not perceive the “talking/learning” about their conditions (of whatever severity), is a part of the getting to a life that is not dominated by those conditions. (Silly exaggeration ahead - OK - you don’t like crowds. Call it social anxiety if you wish, but there are plenty of things you can do that allow a meaningful life avoiding crowds. That does not explain/excuse countless other things that are just life.)

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I was diagnosed last year at age 36; my paperwork says “Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language”, which I understand would previously have been described as Asperger’s syndrome.

I only really started considering the possibility that I might be neurodivergent a few years ago, after experiencing some particular difficulties at work where I seemed to be struggling with “normal” things that other people didn’t seem to have issues with (executive dysfunction stuff). I suspect I wasn’t diagnosed as a child because in the 90’s/early 00s kids like me were just considered “a gifted child, slightly weird, a bit antisocial”. Also, my parents show a lot of the same autistic traits as me (though not diagnosed) so they may not have considered mine unusual.

I realise that the ASD affects me far less than it affects some people; I live a fully independent life and have a decent career - thank goodness the IT industry is relatively welcoming to the neurodivergent. My formal diagnosis doesn’t come with any concrete benefits like work accomodations or disability payments.

However, it has been very helpful to help me understand myself and give me an explanation for the various ways in which I am “weird” - like why I “shut down” and need to leave after a certain amount of social interaction; why I find maintaining relationships requires a lot of effort; why I can get hyperfixated on something obscure to the detriment of even eating and sleeping; why I have sensory issues with lots of clothes and some foods; and so on. It has also given me a connection to a community of people with similar characteristics, which means I can learn coping/masking methods from them rather than feeling alone with my issues.

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Masking allows you to function in society without being punished for being different.

But it also keeps you from making any real connections with people. People who love the mask may not like what’s under it, assuming you even let them see it.

Functional but unfulfilled, that was my life for the first 45 years.

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Listen, I am very annoyed with you right now, but you’re not wrong about everything. I’ve found it difficult for pretty much every diagnosis I’ve ever had to participate on Reddit and other places because I did not find it empowering. Lots of rumination. (I don’t feel that way as much about YouTube because those people tend to be focused more on coping. And even the positive aspects of shared identity.) But yes, some people just roll over. That is true is so many people facing so many things.

Is life generally hard for people? I don’t know, I’m not other people. I try to take people’s suffering at face value. If they say they are having a hard time, I believe them, and I don’t find it useful to compare them to other people I imagine are having a harder time.

This is really a subject for a whole other thread, but there is very real contention between Level 1 and Level 3 autistics. A lot of parents of Level 3s deny the struggles of Level 1s - I find that more forgiveable because being that disabled or parent of someone that disabled sounds incredibly difficult. Less forgiveable, there are some vocal Level 1s that pretty much refuse to acknowledge the existence of Level 3s because they want resources for themselves. They also tend to be incredibly hard on parents. These are aspects of autistic advocacy - some very prominent voices in the autistic community - that are less than ideal. Would it be better for these diagnoses to be split? Probably.

That someone autistic could excel in some areas and not others seems plausible to me. I don’t find it hard to believe someone could hold down a job but struggle mightily in romantic relationships. Them living at home is another matter - a lot of young people live in a state of protracted adolescence these days.

My son is Level 2, highly verbal most of the time, but he struggles to communicate about certain things. People see him and think he’s Level 1. Only by spending an extended period of time with him are people really going to get it. He’s an intense kid. I suspect he will eventually be Level 1 but there’s always a chance he’ll need more support. He’s also gifted, so people really don’t see it. Until they do. My FIL was skeptical until he spent a week with him, and all the sudden he was like, “How are you (parents) taking care of yourselves?” I don’t even notice the stuff that stresses out other people, at this point.

I think the situation for my son is that people are always going to expect a lot from him and not see his limitations, and other people, particularly his peers, will notice he’s different.

For all our talk of masking, here, my son cannot mask. I doubt he ever will. That is of substantive difference from someone like (apparently) me, who figured out well enough how to get along.

And sometimes he is non-verbal. I saw it happen recently and I think it’s really the first time I got what was happening. He didn’t want to go to daycare due to a sensory issue, but he couldn’t articulate that, in fact he said nothing, just sat on the couch with a blank expression in absolute silence and refused to move. I at first treated it like a typical five year old tantrum but the more I thought about it the more I realized how unusual it was for him, and after school we managed to get out of him sure enough the carpet was scratchy.

This is what I mean when I say he can’t communicate certain things.

That is a disability.

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I find some things easy that others evidently struggle with. Mathematics problems, for example. At school, some kids needed step by step instructions and lots of practice to learn new techniques, while I could listen to the teacher and then do it; the underlying patterns were obvious.

I think this is what social interactions are like for average people: it’s simple and obvious, and you don’t need to be taught or to work at it. The difference is, we explicitly teach kids mathematics, we have them practice, give them help if they need it, and we recognise that it’s hard for many people. None of that is true for social skills: everyone is thrown in the deep end, and if you don’t have that automatic understanding, there is no one to explain it or tell you what to do. Since it’s easy for most people, they don’t sympathise or understand why you would have problems. And it’s far, far more essential for life than anything you learn in school.

Do you think that is happening in this thread?

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That’s the struggle, to show what the struggle is. I was massively advanced in reading and math compared to my peers. I was obviously intelligent, so anything I was struggling with was just me being difficult. Misunderstanding was met with judgement rather than curiosity.

I even used that analogy back in my elementary years. I said that math is easy for me, and hard for others. Maybe getting along with others is easier for some than others.

I was told I was wrong and just not trying hard enough.

No one ever told me differently until relatively recently.

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My real gift was writing, but I was no slouch at mathematics. My main issue is due to working memory issues, I felt the need to triple check everything, so if it was a timed environment I was unlikely to finish on time. But every answer I finished was correct. Me graduating Salutatorian in high school came down to a single math test. Oh I was sweating that one! But because of my relatively lower scores on standardized tests, due to the timing issue, I followed the standard math track and got no further than Functions, Statistics and Trig. I’ve never taken calculus.

But my son understands math on a whole 'nother level. He just instantly understands stuff I remember learning in sixth, seventh, eighth grade. My uncle (who was schizoaffective) was evidently some kind of math genius, so I guess he got it from there. My Mom and Grandpa were both engineers so I guess it’s in the blood.

I think that’s why I’m shocked I’m headed toward an autism diagnosis. I’m not an engineering nerd. I have friends. I don’t keep lists of things. I’m having a hard time getting past the stereotypes.

I struggled with this on some level with ADHD. But I did so well in school. But I’m not hyperactive. Etc. Ultimately it requires kind of facing your own bias and stereotypes and making room for more diversity in the expression of these conditions.

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Gotta say having a more functional life would be nice. But that may be more an issue of undiagnosed ADHD than ASD for me, and I’ve pretty much given up on doing anything about that.

And yeah, I don’t want to pretend to be a different person; I don’t want to have to learn about and talk about topics I have no interest in in order to be liked, or lie about my beliefs, or be putting on a performance the whole time so that I can never relax around others. I want friends who like the real me. Trouble is, most people don’t. And even those who don’t want to punish difference have no obligation to anything more than ordinarily politeness - a friendship is meant to be something both parties enjoy.

Damn, that sucks. It should have been obvious that it wasn’t just a question of trying hard enough.

But it’s a general problem. If you’re intelligent, then anything you struggle with must be your fault. I did badly in secondary school, because I was bored and frustrated with the slow pace (no advanced classes in the UK; my school didn’t even do streaming), miserable and depressed due to my lack of friends and inability to fit in, and unable to maintain focus on anything I wasn’t interested in. But since I was obviously intelligent, it was just seen as my fault for not trying harder; I was never given any help or suggestions for coping techniques, and no ever suggested it wasn’t just laziness.

I was the exact opposite; I did well on tests and exams because you’re sat at a desk with no distractions, and there’s a short deadline so you can’t put it off until later. And I had good exam technique: do all the questions, then go back and check the answers afterwards if you have time. If you get stuck on something, skip it and go on to the next question, and similarly go back if you have time. It’s far better to lose a couple of marks for arithmetic errors than to fail to finish entire questions; I think you’ve said that you’re a perfectionist, which probably explains why you didn’t see that.

I wasn’t a genius like your son (though I also didn’t have anyone to teach me advanced maths. Your son is lucky; I would have loved that as a child, I remember how excited I was in primary school when we learned new things). But I was enough above average that it was obvious, and became another thing alienating me from my peers.

Coursework was the problem for me: what I needed was to be held at gunpoint and forced to complete it, with all distractions removed. :sweat_smile: And I struggled with writing essays. Understanding things wasn’t hard for me, but getting my thoughts in order to communicate them effectively was. You’re lucky to have a gift for writing, since it’s a way in which you can communicate well and be understood. Too often I find people misinterpret something I’ve written, and it’s yet another occasion to be misunderstood and to fail to connect with other people.

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I mean, I built and run a very successful business, I am the face of my company. But that’s all easy, that’s all scripted. I am really good at customer service.
It sounds nice, but it was pretty empty. There was not a single person in my life who knew anything about me.

I didn’t want to either, but I had to. By high school when bullying started leaving me with more than just bruises, and “behavioral therapy” that was just people telling you to not be angry… I masked, hard.

I didn’t relax around others, I was in a constant state of hypervigilance. I wanted friends, but was absolutely convinced they wouldn’t like the real me. People really did like the masks, but the masks only go so deep, and you can’t have real friends like that.

Pre-covid, I actually had a fairly active social life, on paper…

I think that that’s what is most being looked for here in this thread. Not excuses, not showing off a diagnosis for pity or prestige, but just looking for ways of adapting ourself to the world, without entirely losing ourselves in the process.

That there are people getting help instead of punishment for their struggles is an entirely good thing, IMO.

For lots of things, actually. I was also considered to be lazy because of my handwriting. First time my therapist saw my handwriting, he asked, “Have you ever been diagnosed with dysgraphia?” There apparently are exercises for that that are much better than just assigning more writing homework…

My test taking was to answer all the questions, check them over, and then spend the next fifteen minutes checking them until someone else turns their test in first.

Writing essays is how I get my thoughts in order. I struggled immensely when I was writing them, but once I started typing, that changed completely. The ability to completely change phrasing, or rearrange words and sentences allows me to basically organize my own thoughts.

TBF, often in social media, people are looking for something to misinterpret. Judgement is easier than understanding.

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100%. Pretty much anything significant that happens in my life, I have to process in writing. I can’t do off the cuff anything. I think most people would find me verbally articulate but it is a shadow of what I can express in writing. And too often in person I have much to say but don’t know how to say it. Even if I rehearse it, it never shakes out right. And I think I have a sign on my back that says “Interrupt Me.”

It’s funny how I am perceived at work. They know I don’t like attention and tease me about it, but I get a lot of, “You don’t say much, but when you do speak, it’s so powerful.” And I’m thinking, “But I don’t get to say a quarter of what I wanted to say!” I’ve also gotten, “You don’t bullshit,” and “nothing gets past you” so generally my differences are well-received here. But noticed.

I find conducting meetings awkward because I can tell my affect is weird. I’m just trying to get answers and people want to talk everything to death. I think I am at my least masked when I’m running a meeting! I can’t gather information and do social posturing at the same time!

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I actually, weirdly, enjoy masking, although obviously one wouldn’t want to do it all the time. Probably has to do partially with growing up trained in music and having to do a lot of performance in front of others (which I also enjoy, though solo work is anxiety-producing and I prefer group work) and partially because I experience it less as masking and more as, idk, code-switching? Like, sure, I behave a little differently in public than I do one-on-one, but I also behave a little differently e.g. with my family than I do with my friends, and differently with my online friends than I do with my in-person friends (some of that is just due to my style of communication being different written rather than spoken).

But yeah, like you, I don’t really see the difference there. I think it’s good to get practice in all this stuff. Though I understand feeling like it’s too much work. At some point I decided it was something I wanted to really work on, and then I did, but it wouldn’t have been worth doing if it hadn’t been something I really was interested in.

Hmm. Yeah, I think you’re right. There is a bit of non-verbal signaling going on, like, while someone else is talking, you sort of move your body forward and maybe even open your mouth a little like you are about to speak. But also there can be a sort of rhythm to catch when there are slight pauses in the conversation and whenever the pause is a bit longer (which, indeed, may be in the middle of someone’s sentence, so may seem like an “interrupt”) that’s when you can jump in. That, I think, is the part that can be tricky, figuring out when the pause is “long enough.”

Interruptions are also dependent on the culture of the conversation. There are some cultures (e.g., technical people often have this kind of culture) where people interrupt each other frequently (possibly with apologies, possibly not, depending again on the specific culture) and this is considered totally fine, whenever you have something to say that’s relevant you just break in. There are others where you always let people finish their sentences. My family-of-origin is the interrupting kind, and I remember being really confused when I had dinner at a friend’s house and no one ever interrupted anyone else, it was really weird!

You’re right about the social capital thing too – I was just in a group conversation last week where one of the people in the conversation had a lot of social capital and the rest of us were on the same lower level, and all of us deferred to him whenever he made any motions towards looking like he wanted to speak. But that didn’t mean that other people didn’t talk at all, just that he took priority whenever he had something to say.

Thinking about this a bit more, I think there’s also a rhythm of conversation in a group, in terms of the length/speed of what any individual contribution is – so, a number of short interjections/questions/responses are fine, whereas longer more detailed responses are great if used sparingly but shouldn’t be the majority of a person’s contributions. My younger child speaks very slowly and quietly, so I’ve noticed that if people want to include him in a conversation, everything sort of stops while he’s speaking so that he can get his ideas out, which sort of breaks the flow of a group conversation (though it works okay in a one-on-one convo). Not sure there’s much to be done about it but give him more opportunities to talk, to try to get that speed up.

For me sometimes there is a processing mismatch, like, it happens to me frequently (and my child even more) that it takes me so long to think through what I want to say that by the time I come up with it the conversation has moved on. There’s not much I can do about that one (except, as I mentioned before, sometimes prepare beforehand).

One of the things I’ve been working on lately is how to exit a conversation, which I’m really bad at, and usually the other person has to do it. On the other hand, I guess that gives me a number of models to practice with…

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Yeah – I mean – there is some truth to this. On one hand, I feel like discussions like what have been happening in this thread are really interesting and valuable, and I’ve had a couple of epiphanies about how to help my kids as well as myself.

On the other hand – well – so, here’s an example. I hate calling people, especially people I don’t know, on the phone, but (very) occasionally I have to do it for work. It’s been useful for me to have the tools that I can prepare for the call ahead of time, have a script in case I need to leave a voicemail, give myself a deadline, stuff like that. What I have found not useful is saying to myself, “This is hard for me because I might be on the spectrum.” I’ve found that actually tends to make me less capable of doing the thing – it’s like my brain is looking for an “out” instead of using the information in a helpful way.

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I tend to process things through writing fiction. It’s not great, I’m terrible at prose, but it’s meaningful to me. Looking back, I realized that most of my stories tended to be coming of age stories that signified milestones or moments that I missed out on myself.

I even used my medical emergency as a starting point for a very wholesome isekai story…

But yeah, in person, I don’t think I’ve ever completed a thought without being interrupted. (TBF, my thoughts tend to be long and complex, so…)

When you only say a quarter of what you want to say, you learn to be selective about it. For most people, it seems as though their mouth starts speaking before their brain starts actually feeding it any actual information, and then it keeps speaking after it has passed on that information. I learned to be very information dense in my communications, as I usually didn’t have much opportunity to speak at all, and there is still a whole lot left on the cutting room floor.

I get that, but I have more problems with being in meetings than leading them. I’ve been told to “stop looking at me like I’m stupid” when I’m paying attention to what they are saying rather than my facial expression. So, I pay attention to my facial expression, and have no idea what they actually said.

OTOH, I did very well as a Dungeon Master, because I’m playing a different person, and everyone’s on the same page about that.

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OTOH, I spent years not being able to use a phone, and I didn’t know why… Knowing why it was hard made it easier. I could do it for work, but not for anything personal.

Sure, some may use it as an excuse, but they would have found another excuse anyway.