In the very first intake interview with my clinician, she gave me an inventory. More specifically, she walked me through an inventory, so she was making a lot more observations about me than just my answers. Anyway, a few of the questions had to do with idiomatic expressions.
I don't have problems with idiomatic expressions. I can understand why people would, but I don't. There's a book I have called 101 American English Idioms, and I love it, but I didn't learn anything from it.
But wait, you might be thinking, you're such a literal person. Yes, yes I am. Idiomatic expressions, however, aren't a problem, for some reason that I cannot explain.
I also don't feel like I have an issue with sarcasm in general, because if I did, I wouldn't understand most of my surroundings. I know a lot of sassy, sarcastic men and women.
One of the things that you probably know about me if you've been around me a lot basically ever in my life is that I have a particular sensitivity to feeling like I should know something that I don't. I can acknowledge that I get even irrationally upset about this. Often going along with that is others (the ones who expect me to know the thing I don't) being incredulous to the point of accusing me of being intentionally obtuse. Granted, that's more being expected to understand something I don't rather than know, but it's really the same idea.
This happens a lot. At least, I feel like it happens a lot, and it bothers me, but I can't seem to do anything about it, because I don't know that I don't know what I don't know. (What an absolute train wreck of a sentence that was.)
Having autism means that my brain functions differently than that of a neurotypical person. Having autism means I see and experience the world differently than other people, neurotypical or not, do. I am very hesitant to use the verb "cause" with autism, to say that "my autism causes X". It causes a lot of things, but with specifics, I don't want to take away my agency entirely. I keep saying, "It's not an excuse; it's a reason." Autism doesn't cause conflicts; it contributes to them, and it often inhibits me from recognizing them (and conversely others' neurodiversity – again, neurotypical or not – contributes to others not recognizing them).
Yesterday my therapist pointed out to me that my autism is an exacerbating factor in me not knowing or understanding things that other people with other brain functions expect me to know or understand. That, like many things I'm processing here, is both good to know and hard to know. The good part is that I can say, "No, really, I didn't understand, and here's some of why." The hard part is that I can also say, "No, really, I didn't understand, and there's nothing I can do about it except try to explain that I don't understand and hope that I get an explanation.
I am building a little bit on what I wrote yesterday. As I was going through this process, and as I would think about what I would do, how I would react, if the end result was an autism diagnosis, there were people and scenarios from my past that I wanted to address. There were two people in particular that I wanted to talk to most directly. I wrote a letter to one of them today, and I think that when I look at what autism means to me, right now, one thing I wrote there sums it up.
Autism is not an excuse; it's a reason. It's not an answer or a panacea. It doesn't fix anything; it doesn't make the conflicts go away; it doesn't make me any less obtuse. What it does do, in my mind, is say that there's a reason why I appeared to be intentionally obtuse, or incompetent, or obstinate, or apathetic, or whatever it looked like to a neurotypical observer, and why I couldn't see that.A comment I got yesterday (that I'm not comfortable with) is that I need to retrain my brain. I'm not comfortable with that assertion because it feels like that's saying I need to retrain my brain to be not autistic, and I cannot tell you how much that is not happening. (I have a suspicion that I will not share about one of the reasons behind that comment.) Wouldn't that be nice, though, to suddenly not be like this? Probably not, at least not for me, because I don't want to not be me, and not being autistic would make me not be me.
I've said several times that I can't really separate autism from the rest of me. This means in part that there are things I think of that I know are different than others that might be affected by autism. Here's an example, about nomenclature.
My spouse has two people she calls "Dad": her father and my father. I don't have a problem with her doing that, but it at times confuses me. I don't deal well with different people having the same form of address.
I had a colleague at Parkland who has a name which she has chosen to go by at Parkland. She has another name she goes by in other aspects of her life. I have never called her by this second name, because in my view I do not have permission to do so, even though my spouse does, and many of my colleagues do. That always bothered me.
There's a common (or at least so I'm told) practice of telling children to refer to unrelated adults as "Aunt Such-and-Such". This has always bothered me. I will not be bothered by being called "Uncle Jason" by my actual niece, should she decide to do that, but nobody else gets to pull that crap.
There's a flip side to this: my father has five siblings, all of which are naturally my uncles and aunt. There was a time when I addressed them as such: Aunt Peggy, Uncle John, etc. That stopped when I was about 10, when most of them gathered together in my grandparents' kitchen and specifically asked me to not do that. They didn't like the formality of that nomenclature, or at least that's what I think they told me. Anyway, that's why I don't call my father's siblings "Uncle ___" or "Aunt ___". Now my mother's sister, I still refer to her as "Aunt Donna", because (1) I was never told to do otherwise, and (2) I was told exactly the opposite (by both my mother and her mother), that my aunt would be offended if I did not.
So here's the situation where this all gets ugly for me. When I was a kid, my mother and her parents wanted me to call one of their neighbors, the father of one of my mother's (to this day) closest friends from childhood, "Uncle Art". I had two massive problems with this. One, he's not my uncle. He's not related to me at all, as far as I can tell. Two, there was another person, specifically my grandmother's sister's husband (and so my great uncle), who I was also supposed to call "Uncle Art". This second factor may have created even greater confusion in my mind than the first factor, though I hadn't thought about it so much until this week.
Are the issues that I have here because I'm such a literal person (which is definitely an autism-related trait)? I tend to think the "you're-not-my-uncle" part of the issue is. But I think all of these things about nomenclature go together, and some of them may be the way they are in my brain in part due to how autism affects the way I process people and relationships.
It has been observed many times, to the point of it being a standing joke about me, that I am often oblivious. It did not occur to me, until a friend of mine mentioned it at 15:58 05-May-22, that this obliviousness could be (and really doubtless is) related to my autism.
More nomenclature issues:
Many of you know that I was a Part-Time Instructor at Parkland College for 13 years. That was my job title. I used to be able to point to the page in the contract that said that, but my last contract doesn't have that listed, and I doubt I can find any older contracts. (Figures; it makes it look like I made this up.)
Many of you also know that I was adamant about not bring called "Professor", because I was not one. I would have in my opening announcements posted in our LMS a statement clarifying that, asking that students please not call me "Professor". At Parkland College, a "Professor" (whether an Assistant Professor, an Associate Professor, or a full Professor) is a full-time faculty member with tenure. (See their contract.) There's a Black Jack Justice line (from Episode 57, The Cheshire Cat) where he says that calling him "Detective" is "a bit like calling your Plumber "Plumber"", and clarifies that "for us, it's not a rank, it's a job". That's not the situation I had at Parkland; "Professor" is a rank, while "faculty member" is a job. I explained in later years (when I still had students who weren't paying attention) that it's like walking up to every police officer you see and saying, "Hello, Sergeant," regardless of the actual rank of the officer. You wouldn't do that, or at least I wouldn't, and you shouldn't.
There's a scene in Fail-Safe (the novel by Eugene Burdick and Harvey Wheeler) where a character is addressed as "Doctor" despite not (yet) holding a doctorate, and it is noted that the speaker was not corrected, implying (to me) that this was somewhat scandalous and certainly inappropriate, but also faulting the character without the doctorate for not correcting the speaker. (I'd look that up if I could right now; I know I've got a copy of that book somewhere, but I haven't a clue where.)
I had a conversation about this a year or two ago, which of course I cannot find, where the person I was talking to said that in his experience, it is courteous to assume a higher rank when talking to someone. (Another Black Jack Justice moment comes to mind, from Episode 49, Jawbone Of An Asp: the client, who has two doctorates, says she doesn't understand why one wouldn't assume the honorific "Doctor" when talking to an unknown person, and Black Jack (and I the listener) think she is totally unreasonable.) He said that he's been taught that you should always assume people have higher rank, and then be corrected later (like in the Burdick and Wheeler). That is anathema to me, but I'll say that a few more times here.
I had a situation today with my therapist where she used the word "Professor" to describe my previous work, and I tried to let it go, because we were close to time on my session and I didn't want to interrupt her, but then she did it again, and I had to stop her. I told her about having to deal with that issue with my students, and that some people, possibly including her, had an idea that "professor" just means any postsecondary teacher, which isn't accurate. She said that while that is true, she also had the other experience that I said was anathema: there are people who would be offended not to be called by a higher rank.
This reminded me of another thing I ran into at Parkland. I got a tailored mailing once from IAR (Institutional Accountability and Research), who know damn well what my rank is, but it was addressed to "Professor Benda". I complained about this; given the number of things that were obviously tailored from a database, getting my title right should have been a trivial matter. I was told that there were faculty who were not Professors who insisted on being called Professor anyway, and that IAR was trying to avoid offending them. I replied that they are wrong, that they don't get to do that, and that IAR should not be enabling them.
Is this related to my autism? Very likely. I'm a very literal person, as has been noted, and that is something that doubtless infuences my feelings here. My feelings are very strong, though: you don't get to claim an unearned rank, and it is inappropriate (and disrespectful, to the person and the rank) to address someone by an incorrect rank.
There are lots of reasons that I like collective bargaining. I understand that there are people who emphatically dislike collective bargaining; those people believe that everyone should always negotiate for themselves. That sounds like a nightmare for me.
One of the biggest reasons for that is that I'm bad at self-advocacy. I'm a very passive person; I don't like situations that create conflicts with other humans. My autism says that a reason for that is that I often don't understand the conflicts, which is more true than I even noticed before. Another thing there, specifically with pay, is that I don't care enough. I've probably said elsewhere that when you go into education, in my experience, you've made a decision that money isn't important, and that you are not and will never be a person who chooses a job based on how lucrative it is. This puts you at odds with a lot of people in society; I think as someone with autism, who is already used to being at odds with people in society, this was not even worth noticing.
I may have mentioned this elsewhere, but when I got my first teaching job, at West Aurora, I was telling someone about it, and one of her first three questions was what the salary was. I didn't know, and I said as much. She was horrified, and started berating me for accepting a job without knowing, let alone discussing, the pay, which to her was of paramount importance. Her husband jumped in and pointed out that as it was a union position, the AEA-W had negotiated the pay scale, and where I fell on it, and there was nothing I could do about it, so it didn't matter, which is why I didn't know. I did go look it up later: $29,141.69; I looked it up mostly so I could answer that question when someone asked.
A bit more about being bad at self-advocacy here, if I can get it written. It's hard.
One thing that happened as I was going through this diagnostic process is that I got some testimonials from people I consider my friends, who got asked (by me) to write what they knew (or thought they knew) about autism, and then what behaviors (in what contexts) they'd seen from me that they thought fit. My clinician was appreciative of that, especially ones from friends who knew me 30 years ago and could speak to how I was then; clinicians don't often get that type of picture, because there aren't people who can provide it, except maybe parents, who are often clueless (her words).
She said this would be something she would always remember as a clinician, because no one had ever done quite what I did before in trying to supply evidence. She cautioned me, however, in reading what they had written (which I had said I would do, but not after she had seen them). She didn't want anything they said to damage my relationships with any of them, because friendships are very hard to acquire and maintain. Again, I know at this point she was saying that not only to me as a person with autism, but she was saying it as a person with autism herself. She gets that; she lives it.
I wanted to talk a little about that here. My mother has said to me, "I don't know why you have such a memory for unpleasant things." I think part of that may be influenced by autism: the "unpleasant things" she spoke of are invariably times when someone expected something different, or I expected something different, in behavior. So they are all instances where … I don't know if I've mentioned this, but one of the things that came up in my first session with the clinician was that (in general) neurotypical people have an inherent understanding of rules of behavior, or they don't have to be conscious about learning them, while autistic people are very much the opposite. Autistic people have to very consciously learn what other people's expectations of behavior are, generally by mimicking the behaviors of others, and then make very conscious decisions about whether to mimic those behaviors (which may seem unnatural and definitely seem unintuitive) or whether to not care. So these "unpleasant things" are instances where I didn't understand someone else's rules for behavior, and so that gets flagged for a very specific reason that I didn't understand for many years.
There's something else that kind of goes along with that. That means that there are things that other people think are minor or trivial, but I don't. I'm also … I don't want to say I'm not a forgiving person, mostly because that is supposed to be a virtuous thing to be, and I don't want to not be. Also, I think there are people who could disagree with that with evidence. I think that might wind up going back to the "severity is in the eye of the beholder" issue; people who see me as forgiving would probably cite transgressions that I think are minor, but they don't think so.
Anyway, I have a difficult time with this. There's some discussion coming in a few weeks about an aspect of this, and I don't want to put the cart before the horse there, but one thing I feel is that if you disliked me when you didn't know I was autistic, then trying to argue that you don't dislike me now rings hollow; I feel like you've already shown your true colors, because I haven't changed. (I know this cuts other ways, too, and I feel like I have a lot more acceptance of this happening to other people (and how they feel) now that I am going through this.)
There was a time when someone I had thought was my friend (and had been a close friend for seven years at that point) said, of me and in front of me, "He doesn't care if he hurts my feelings." That was a relationship-destroying comment. I cannot express adequately how much that hurt me, and how much it made me feel like this person had pulled the wool over my eyes for seven years. (She would tell me six months later both that "I never thought you were not my friend" and "I was deliberately trying to hurt you", which to me are totally incongruous statements.)
I have a very hard time with change. I don't think that's an autism-influenced thing, because I'm not talking about disruption of structure (which is an autism-influenced thing). I'm talking about change of feelings. I can know, and I can have people tell me, that people's feelings change, but I have an incredibly difficult time accepting that. I said many years ago (possibly before I even had a girlfriend) that I can't imagine having an ex-girlfriend, because I can't comprehend that kind of change. Maybe that is partly the autism talking, because I don't understand how other people's brains work, but … I don't know, and I can't separate that part of me anyway, so it doesn't matter.
The point of all this is supposed to be that interpersonal relationships are hard, for good and for bad.
[12:43 16-May-22]
There's one friend of mine in particular who I can picture reading this and saying, "People change all the time; you can't expect that to not happen." (She had a Psych minor in undergrad.) Yes, you can say that all you want, and logically it makes sense, but I will repeat again that actually accepting that is hard, because I don't understand.
I think it has to be an autism-related thing for me that I'm often very afraid of how other people will react to something I do or say, because I don't understand or have the same viewpoints as those other people.
I apologize for the vagueness here, but I was thinking about this tonight. Something happened last week, and I felt strongly about it, and I wanted to say something. It was something positive, the thing I wanted to say, but I had many worries about it, about whether I was out of line in choosing to say what I wanted to say. I wound up writing a letter about it to the people I thought were most responsible, the people who I thought would best be able to receive my feedback. I put it in the mail on Tuesday; I had it ready to mail on Monday, but I couldn't find any stamps, and I didn't have time to stop at the Post Office. (Tuesday I had more time and bought these stamps.) So it's done, right? I won't even know for sure if it gets delivered, and that sort of makes it easier, since it can't come back to bite me. Except tonight [Friday], I saw it. I mean, nobody would just leave the letter I wrote lying around on a desk, right? Uh, yeah, that is exactly what happened. So I know it's there, and I've got the level of panic all over again.
When I was at ACS, I would not have noticed the racial or ethnic demographics of the faculty. I can notice those of my classmates mostly in retrospect; I do know there were only three White girls in the class, and the fact that I don't know how many White boys there were in my class (more than three, I can tell you in retrospect) should tell you that there were reasons I noticed that other than pure demographics.
At Naperville North, though I didn't notice it at the time, I was in a nearly all-White school in a mostly White district. I had no non-White teachers (except for my very first PE teacher, Paul Omi, who is Asian. I just looked through my senior Yearbook, and non-White faculty are nearly nonexistent. As I mentioned, I didn't notice at the time, but I also wouldn't have noticed if there had been more racial diversity. I wish there had been, though, in retrospect. It would have mattered later.
Representation matters. We usually think of that in meaning it matters for someone to see themselves represented. It matters, for instance, to a Black student to see Black faculty. That was always something we were cognizant of as a Department at Parkland: the lack of diversity in general. Women weren't underrepresented, and Asians weren't underrepresented based on our student population, but we had very few Black faculty, and none of them full-time. But that's not all "representation matters" means. The lack of diversity I saw in my own high school experience means I subconsciously expect high school teachers and coaches, particularly coaches, to look a certain way, and in a more diverse school, they don't (and shouldn't). That's why, even if you hail from a privileged demographic, representation of other demographics matters.
I don't know how much of that is related to autism; it's one of those things where I can't separate "me" from "autistic me", because they are the same. It's certainly something that autism doesn't make any easier, as part of autism makes it hard to see other people's paradigms, just as it is hard for neurotypicals to see your paradigms.
It has been noted that as a student, I care about learning, not grades. That's something that I think isn't caused by autism so much as is explained by it: I see things differently. If there is one thing that made me a bad teacher (not saying that there is anything, and not saying that there is only one thing), that's it: the fact that I don't understand learning for the sake of grades as opposed to learning for the sake of learning.
I've run into a few situations where people who either just met me or didn't know me well assumed I have always had high grades in school. No. Certainly not. I remember well my first day of high school, and hearing the teacher in my 7th hour class say that everyone in that room earned an A in eighth grade English, which of course I did not. High school GPA was always a game in my view, and it was a game I had no interest in playing. I did care if I passed, as my Advanced Physics teacher observed, but I didn't care about what grades I earned; I cared that I learned the material, and generally speaking my exam grades were very good.
So I want to talk here about math in particular. Here are my high school math grades, direct from my transcript:
| Course | Teacher | Grade |
|---|---|---|
| HON.ADV.ALG. | MARTIN R | A |
| HON.ADV.ALG. | MARTIN R | A+ |
| H.TRIG TOPCS | MARTIN R | A+ |
| H.PRE–CALC. | MORSE C | B+ |
| AP CALC.B/C | PETERSEN W | B |
| AP CALC.B/C | PETERSEN W | C |
Honestly I'm surprised; I thought I had Cs in the last three. For what it's worth, I did get a 5 on the AP exam. I also got a 4 on the other AP exam I took, in US History, in which I got a D and a C.
So the obvious question is: why did I get better grades under Bob Martin? Did the head Math Team coach give preferential treatment to his math team members? No. Well, not exactly. He structured his class to give extra challenges. If you chose to take on the extra challenges, it gave you extra credit in his class. I thrived on those extra challenges, which did make me good for Math Team, but it also boosted my grades in his classes. That didn't happen, at least not nearly to the same extent, under other teachers, though it doesn't mean I didn't learn as much curriculum in those classes. It just means I didn't do "as well" when measured by course grade.
As teachers, we often get asked about extra credit. We tend to think, as teachers, that students have a particular view of extra credit, and for a lot of students, we're right. At Parkland, we even had a specific Department policy limiting extra credit possibilities in a course (I believe they could be no more than 1% of the course grade). "Extra credit is inflationary," the reasoning goes; to the students asking for extra credit at the end of the semester, invariably the response is, "You didn't do the regular credit." All that is not wrong, but: for me as a student, where it was *never* about grades, it's different. I wanted the extra credit because it was fun, because it was challenging, and if it raised my grade, fine. I didn't see extra credit as an excuse to blow off the regular work, because any decisions I made to blow off the regular work (and yes, that happened) were independent of extra credit, because I didn't care about grades. I have to think that it was hard to have me as a student sometimes because of that attitude, because it isn't how the neurotypical student acts.
One last ACS bit here: one reason I haven't mentioned as much that I thrived at ACS is that the curriculum was always challenging. That was THE WHOLE POINT of the ACS curriculum. I still ran into things I didn't want to do, or couldn't muster doing (and the autism is a factor in most of those things), but ACS is all about stimulating intellectually curious students. Feeding me that academic attitude every day honestly made not getting it as strongly later harder for me – which is again a reason why I ate up Bob Martin's classes with a spoon.
Two final observations from my transcript:
- In case you have ever wondered where my domain name, and my Twitter handle, and who knows what else I use it for, comes from, there it is, right at the top of my transcript.
- Although it didn't count toward my GPA, I did earn an A all seven semesters in PE. I never really understood not earning an A in PE at NNHS; two-thirds of the grade was participation (showing up to class and following the rules), one-sixth was a skill grade (which was totally subjective), and one-sixth was a written test in each unit. Much as I say for other classes that I did not do things that I was "supposed" to do, I could never understand not doing what you were supposed to do in PE.
Words matter. Nomenclature matters. I get that. It can be hard, though, and I think being used to seeing words from a place of privilege is part of what makes it hard.
The most well-known examples of nomenclature changes have to do with race, whether it's Naperville Central in 1992 (where I don't like the way it was handled, but other schools with similar issues later showed that handling it a better way would likely have been much harder, which I didn't see at the time), different names for people of East Asian or South Asian ancestry, or perhaps most notoriously Blacks. I remember hearing a comparison of the Rodney King riots to the Watts riots, and a commentator said that you could run the same news story from 1965, just changing the '60s term to "black". There's a scene in WKRP in Cincinnati with Les and Venus, where Les uses that '60s term, and Venus says, "The word is black. Read my lips: black." Les doesn't get race relations at all; he's not hostile to them; he just doesn't understand them. (Perhaps Les Nessman has autism. This didn't occur to me until this afternoon.) Growing up as I did in an era long after that '60s term was out of vogue, it was awkward to hear it on TV. I also note though that "Black" was out of fashion when I was an undergraduate, so these things change often.
Anyway, as I've said, I'm used to seeing this from a place of privilege. My policy has been that if you are a member of a class, you get to decide what nomenclature you think is appropriate, and while I can disagree with you, I don't get to tell you you are wrong. There's a particular word that is frequently used to refer to female humans that has always made me uncomfortable, and that I refuse to use, but that I know a number of women who do not share my opinion and use it to refer to themselves and others. I do not wish to be at all patronizing, and I would never tell women not to say something that they get to own, but I still have feelings.
As a neurodivergent person, and in particular as a newly aware neurodivergent person, I find myself thrust into a class that … well, let's just say has some opinions. It is clear there are some bits of terminology and turns of phrase that some people embrace and others disdain, and there are solid reasons for both.
Example: "I am autistic" vs. "I have autism". There are people for whom the latter is not what they feel, and I think I get why. Let me be clear on my feelings on the word "disorder": "disorder" is a clinical term which, in a clinical setting, means "atypical condition". That's all it means. A disorder is not necessarily something to be treated, and it certainly isn't something to be cured. So in my mind, saying "I have autism" isn't any different than saying "I have narrow feet"; it's a simple fact of a characteristic I have, and one I have no control over, but not at all a defining one, and certainly nothing to be fixed. That said, there are doubtless autistic people who don't see it that way, and who see "being autistic" as a trait and "having autism" as a condition to be treated.
I could cite at least four other examples just with autism, where one person's positive language (or symbolism) is another's negative language (or symbolism). It's an exhausting minefield. It also makes it very hard to know how to choose to be positive, which is a thing I want to do, but is also a thing which I feel at this point that no one can tell me how to do (or certainly do for me).
I saw a sign today:
EMERGENCY ALERT
Occupant with Autism
May not respond to verbal command
Clearly that's not my manifestation, my "flavor" of autism, if you will. I think that's something that makes autism hard for non-autistic people (and for autistic people, too), that autism means different things in different people.
I also saw a T-shirt online that said, "I have autism; any questions? Ask my Mom." My first thought was, oh dear God no, don't ask my mother; she won't help you, and that's totally neither her fault nor her responsibility. It strikes me that that isn't a shirt someone chooses to wear; it's a shirt someone's mother chooses for them to wear. (Responsibility for deciding what a kid wears is among the myriad reasons I'm glad I'm not a parent that has nothing to do with neurodivergence.) The point is, though, that that shirt presumes (and projects) a certain flavor of autism, and a certain set of expectations (including that the wearer can't answer questions but someone else can), and that's not necessarily the most helpful thing when facing the very individualized spectrum that autism actually is.
I got a complaint from a friend that this webspace was not mobile friendly. I don't understand the complaint; I look at my CSS, and there's nothing there that should antagonize a mobile user.
My wife, who is a web designer just in case you missed that bit, said she might be able to give me some recommendations. I note, however, that, as I said on the first page:
Some of you probably think I should be overhauling the entire code base here, and you're not wrong, but in what will probably become a recurring theme, I don't care enough.This code, and in fact every page in what is listed as Version Twelve of my webspace, is written in XHTML 1.1 Strict, a specification which dates to 2001, was revised in 2010, and is now (as of 2018) listed by W3C as a Superseded Recommendation (which in boring words means They Want You To Do Something Else). But much like me being a bad chess player, I don't care enough.
I mentioned to my clinician that in order for me to do something, I either need to find it important or interesting. To her credit, she did not jump up on the table and say, "Yes, that's because you have autism." I feel like there is such a thing with me as an interest threshhold: if a task or activity does not reach this threshhold, it's not happening. On the other hand, if it reaches that threshhold, GIVE ME ALL THE THINGS. Look, for instance, at me playing an RPG. If I give up, I give up, and not much is going to get me back in unless I come back next year. If I'm into it, though, that is my activity for the next couple hundred hours of time I have to spend on it. My point is that there's not much middle ground here.
This strikes me as an autistic thing, for several reasons: the depth of interest, the independence about what's important, probably others.
Have you ever had a situation where someone says something, or does something, or gives you information, and hours go by, and then suddenly you think, "Wait, WHAT?"
Both ADHD and Autism exhibit processing delays. (They also, says the resident ADHD-having person in my house, both exhibit the "interest threshhold" idea I described a few minutes ago.) The thing is, I think, the processing delays manifest differently. For ADHD, in my experience as one who does not have ADHD, the processing delays are more often found with questions or directions; the delay can be imagined as searching for the correct next step. For Autism, it feels more like there's a delay in processing meta-information. The places I have issues are with recognizing something is wrong, or bad, or confusing. This got brought up in the Brown book, in which case it is of course actually potentially very dangerous.
I saw another one of those signs today, the one that says, "Occupant with Autism — May not respond to verbal command".
It reminded me of a T-shirt I saw: "Adult with Autism; Will not respond to verbal commands; Verbal polite requests may be given due consideration."
I understand a message there: I'm adult; treat me like one. Treat me like a human being, not like a piece of property to be ordered around. I get it. Still, I wouldn't wear something like that, because I feel like it belittles the other side, the actual people with that actual problem of not dealing with verbal communication.
There's a lot of anger I find in people with autism. In fact, even the phrase "people with autism" can provoke angry reactions; I've seen T-shirts that say, "I do not have autism; I am autistic". I had a somewhat uncomfortable discussion with one of my cousins on Saturday, and one of the items in that discussion (which actually wasn't particularly comfortable until I thought about it later) was when I mentioned having an autism spectrum disorder, and he said, "It's not a disorder." Yes it is, but I don't think that word means what he thinks it means. To me, a disorder doesn't mean something is wrong; not at all. It means something is atypical; that's all. It's a clinical term meaning "atypical". But clearly to him, it means something else, something more insidious when you're assigning that designation to a person. I understand the anger. I understand where this comes from. Words matter. Designations matter. Labels matter. It's difficult to deal with all this, I think no matter what side you're on. It's difficult to advocate for autistics as an autistic, because not only does autism present itself and manifest itself differently in different people, but it turns some of them – some of us – very angry.
It's been a while since I posted anything here, but I had a few thoughts today that I posted on Facebook, and I thought I should crosspost them.
I saw a post on Twitter about some obnoxious "autism simulation" someone once had experienced, and the comment was that "tell me an allistic designed this without telling me an allistic designed this". Right, but … it's not just that. It's a crazy overgeneralization even beyond the "tomfoolery". If someone had done this to me when I was in school, I would have reacted like, "Oh, yikes; glad I'm not autistic," and I feel like that is the point – to scare people away from autism and/or make them glad to be NT. Except of course I *am* autistic. If I'd had that at the time and somehow knew I was autistic, my reaction would have been, "Oh, wait, no; I must not be autistic, because I'm not *that*." That's one of the things I still fear most about this diagnosis: that somebody is going to say I'm "not autistic enough" because of X, Y, Z, P, D, or Q. I do feel like I'm at a point where I have enough confidence to fight that, but it's still there.
I remember when I was in Eighth Group at The Avery Coonley School, I got interviewed by somebody who was doing some kind of research on the school. (Curtis, back me up if you remember this, because I think you got interviewed at the same time.) I remember specifically saying, and my classmate agreed on this, that "giftedness" was at least a misnomer (if not a complete fiction), and that what mattered in making us who we were at that point (after ten years as Seahorses) was the environment, the support of the school. We felt like anybody put in that environment would turn out more or less as we had: individuals with our own strengths and weaknesses.
This came to mind because one thing I've heard autistic people say about autistic people is that they develop on their own timelines. This would be one of those unintentionally supportive things about ACS as it relates to autistic students: ACS assumes *everybody* develops on their own timelines. Nobody cares if you could read at 2, 4, or 6; if you can't read at 6, there's support for you, and if you could read at 2 (like me), you don't need that support. Nothing about ACS (with the possible exception of P.E.) was one-size-fits-all; even in P.E. there was a recognition that people are different, and that was never a bad thing.
I've commented often, looking at various social relationships I have had, that I needed then to be in the order they happened. (Incidentally my wife hates hearing me say that.) I look at one of my most valued friends now (I won't say closest, because I don't think we're that close), and if I'd met her when we were 19, I could not have handled her at all. She would not have been my friend. Different timelines.
I don't have the sensory issues that some (most, even) autistics have, but part of that is the way it was presented. I've mentioned before that I was famous for being able to walk into the Physics lab in high school and identify that computer monitors had been left on. It wasn't that my hearing range was higher than my classmates', as we actually did test that in class once; it's just a sensitivity to that noise that most people don't have. Another one I would have is wearing a sweater, and I didn't think about this until *just now*. I remember having a friend as an undergraduate who told me that there was one particular sweater that she usually wore with nothing underneath it. That was a foreign concept to me; how do you wear a sweater without underlayers? That's the whole point of a sweater. I think when I was a kid, if I'd gone through some sensory testing, I might have tested positive for "can't have a wool sweater against skin". It wouldn't have been to the point of feeling pain, which is how it gets described to me, these issues, but it would have been uncomfortable. Yet I wouldn't have thought about that when I was a kid, because no one *does* that (so I thought). I don't wear a sweater (cotton or wool) without an underlayer that *should* – and I don't think of this, but it's true nonetheless – prevent the sweater from touching my skin. That's *normal*. I remember having this talk with another friend, who'd had an issue with her bra showing through her sweater, and I couldn't understand how that even works.
I also remember at this point that the first time my now-wife saw me take a dress shirt off, she was disappointed that I had an undershirt on underneath (which still needed to come off for her to see what she wanted to see; that was the source of the disappointment). Again, a foreign concept: what do you mean you don't wear an undershirt under a dress shirt? How? Again, I knew nothing of neurodiversity then, or that I was neurodivergent; this was just *normal*.
Let's talk about autism (and neurodivergence in general) in fiction.
This thought process was spawned by this Twitter post. As an aside, I will say that I've been fed some interesting thought prompts on Twitter regarding neurodivergence.
Now, years ago (after my wife got her ADHD diagnosis), I remember watching Desk Set (1957), and I looked at Bunny Watson (Katharine Hepburn's character) and said, "Does Bunny Watson have ADHD?" Sadly the writers (who were Nora and Delia Ephron's parents) are not around to ask, and I'm sure they wouldn't have said that about her in 1957, but there are definitely reasons to see that. It is inarguable to assert that a major plot point in that film is that Bunny Watson's brain does not work the way anyone else's does; it's what makes her good at her job. In a way, her brain works more like a computer. It's not a long trip to say that she's neurodivergent, and "I associate many things with many things" sounds like ADHD. (Her philodendron could even act as a metaphor for hyperactivity there.)
When I first got my diagnosis, I rather quickly identified one fictional character as possibly autistic: Les Nessman (Richard Sanders's character) on WKRP In Cincinnati (TV, 1978). The biggest hallmark I think for Les that I see is his perception of "normal"; though it's played for comedic effect on the show, Les simply does not recognize that his approcah to reality is not shared by anyone else. He's not bad at his job, though he's awkward at it. That awkwardness is recognized everywhere. Recall the episode where Les gets banned from Riverfront Stadium because there's a suspicion that he's gay? Somebody had said of him, "Queer little fellow, isn't he?", using a different definition of "queer" (just meaning "nonconforming"), and it was linguistically misinterpreted. I think about how many people have deliberately accused (and I say "accused" because it was meant to be derisive and hurtful) me of that, and I can see more of how that comes about (aside from run-of-the-mill bullying). I don't think Hugh Wilson in 1978 would have said Les was autistic, but I can see it.
I mentioned that on Twitter, and a response I got named Det. Sgt. Arthur Dietrich (Steve Landesberg's character) on Barney Miller (TV, 1975). I would not have thought of that, and I am fairly certain that in my life I have seen every episode of Barney Miller. I do see where this idea is coming from, though. Dietrich is most famous for both esoteric knowledge (which can be a trait of autism) and deadpan delivery. Usually I see him as delivering the comic lines straight intentionally, but if he doesn't *know* what other people find funny and his character is genuinely off-the-wall but sincere, of course that fits with a character who is autistic. Again, I don't know that Danny Arnold, Steve Landesberg, or anyone else would have described the character that way, but I can see it.
I feel like one of the big traits of being autistic – though I know this doesn't apply to everyone, depending on background and life experiences – is a combination of comfort in one's own skin and apathy to the ridicule of others. It's not a celebration of nonconformity; it's a genuine lack of recognition and an accompanying apathy. The autistic person (especially the undiagnosed autistic) does not say, "I am nonconformist and proud of it;" the autistic person says, "YOU say I am a nonconformist, but I don't care what you say; I seem perfectly normal to me." That's absolutely both Les and Sgt. Dietrich; the main difference is the awkwardness of Les is played up (especially outside the ensemble cast), while the awkwardness of Dietrich is essentially unnoticed within the universe of the show (in part because we rarely, if ever, see Dietrich outside the Squad Room).
And so, going back to Desk Set, I ask the following: is Richard Sumner (Spencer Tracy's character) autistic? In support, I give you the opening scene, where Sumner walks into Azae's receptionist's office. I'm not even talking about the absentmindedness of Sumner showing up the wrong day. (Aside: is Ned Brainard (Fred MacMurray's character) in The Absent-Minded Professor (1955) autistic? He's likely some flavor of neurodivergent, But that's an analysis for another time.) Look at the interaction with the receptionist: he observes, as she writes down the location of the Research Department, that she is left-handed, and that the opulent windows in the receptionist's office were designed for a right-handed person, an observation by which he is so distracted that he leaves the office without the written information. Then he goes to the Research Department, asks for Miss Watson (who isn't there yet, because she's at IBM seeing a demonstration of a project similar to Sumner's), and when she's not there, he waits nonplussed and measures the department.
Two more asides: (1) is the main character in the play Cheaper By The Dozen autistic? (That was our Eighth Group Play in 1990.) I ask that because that character is an "efficiency expert", which is an ancestor job to "methods engineer", which is what Sumner is. (2) of the four main characters in Desk Set, Sumner, Watson, Cutler, and Costello, the only one who is staunchly neurotypical is Mike Cutler (Gig Young's character), and we hate him for it. As the audience, we grow to like both Watson and Sumner, for whom things do not go their way, and we revile Cutler, for whom things only go his was because he expects them to. In a way, the neurodiversity of the network's employees, including the trademark (who is very much in her own world, and that's not weird to anybody but Sumner the outsider), is a massive part of the movie. If everyone were neurotypical, the whole organization would come crashing down (as Miss Warriner, who also appears to be very much NT, has almost literally happen to her). I get the sense that Azae knows this but doesn't realize it, and also that "Bosses" (whatever that means, it has a capital B) need to be neurotypical (hence our Fall Guy, Mr. Cutler).
Anyway, that all may be garbage, but those are my thoughts today.
I've got a lot that I want to say here that's been percolating basically all month. Yesterday morning when I saw my therapist, I gave her this PDF (the filename says "Twitter for Danielle" because my therapist's name is Danielle), and that pretty much dominated my session, and … there's a lot of stuff. Some of it is identifying traits, as I've said this page is supposed to be about, and some of it is about concepts and terms.
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[21:09 28-Jun-23] I guess I want to start with the obvious, something I said way back at the top of the page: everyone's experiences are different. I don't know who my audience is reading this (hello!), but if you happen to be reading this and happen to be autistic, I want to note that my experiences are not yours, and your experiences are not mine. We may have some shared experiences; in fact, we probably do have some. I wouldn't presume to know what they are, though. I know my experience with autism is different than anyone else's in some respect or other, and in some cases there are reasons. I would never presume that my experience is also yours, just that it's mine.
So the obvious then: I have issues when my experiences are devalued or invalidated just because they aren't someone else's. Case in point: this thread. This is an autistic person who stated a generalization that a certain characteristic applies to all late-diagnosed autistic people. It does not apply to me, and I stated my disagreement. The person who made the claim then doubled down, claiming that I am pretending to know more than "actual autistic people". That bothers me, and I won't pretend it does not. One of my biggest fears with autism is being told that I am not autistic enough, and there it is. (I'll talk more about the specifics there in a bit.) But even without my paranoia, that's just something you don't do. If you make a statement that says "this is a universal truth", and somebody shows you evidence to the contrary, why would your response be to discredit the evidence rather than to modify the universality of the proposed truth? I've read things that say 87% of autistics believe/think/feel X. Okay. What does that make me think about the other 13%? Nothing, really. It certainly wouldn't occur to me to decide they don't exist. But I digress.
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I want to talk a bit about "masking", which is a term I started hearing around the beginning of February, and when I first saw it, I had no idea what it meant. I've had some of that explained to me, but I still don't understand it. Here's what I mean, quoting me from 15:38 12-Feb-23:
"Masking is a term explaining how neurodivergent people feel the need to camouflage in social situations to appear neurotypical. Masking is a form of social survival displayed in different ways depending on the behaviours the individual wants to conceal." Yeah, I think I not only don't do that, and have never done that, I wouldn't have the first clue how to even learn how to do that.
This is an example of something that … I want to say "comes naturally," but I don't believe that … it's something that a lot of autistics (and it seems other NDs) do, or at least claim to do, and aren't always conscious of. The whole concept bewilders me; how does an ND person even figure out how to do that, let alone do it? Quoting me from 15:36 12-Feb-23:
But … how? I mean, there's so much you have to understand about both ND and NT in order to be able to pretend like that, and … just … how?
My friend who tried to explain this to me (who if I remember correctly is ND but not autistic; she was not one of the ones who suggested to me pre-diagnosis that I might be autistic) agrees with me that I don't do it. I don't think it's something one does naturally at all; I think it's a learned behavior, and I never learned it, because I was never in an environment where I had to learn it and was actually aware of that.
I want to reiterate that I see a lot of people for whom this is a natural part of their autism experience. I saw a post just today that talked about masking being more difficult to do consciously, and that it felt natural when (because of her experience) she "thought everyone did it". That reiterates to me that it's something that is at times done unconsciously, though I still wouldn't say "naturally". I also still believe that's not me. Does that somehow make me less autistic? Of course not. It just means that's an experience I don't have.
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One thing that is very, shall we say "sticky", among autistics (aside from the whole host of issues regarding nomenclature that I've already hashed and rehashed on this page) is the concept of self-diagnosis: what that means, whether it's valid, and other stuff. (I do say "stuff" there with some disdain, because it feels like these are silly fights to be having when they invalidate others.) So what does that mean, and (perhaps more importantly) why do I feel that I didn't do that (and couldn't have done that)?
So to me, "self-diagnosis" means that one has evaluated oneself. I'm not specifying how. I'm not saying that someone has to get out the DSM-5 and read the diagnostic criteria. I'm not saying anything specific about how that happens, other than that one learns enough about autism to be able to then look at oneself and decide that oneself fits this condition. That's it. I make it sound simple, I realize, and I don't think it is simple at all; the journey is arduous. I think that's quite the jump, no matter how long or short the journey was in learning about autism, to recognize oneself; it's why I characterize it as the Autism Fairy comes along and bashes you on the head with the Epiphany Wand. That's an amazing (and scary) realization to come to.
I talked about this with my therapist yesterday morning, and she agrees that that's exactly what it means: you figured it out yourself.
I did not do this. In fact, I did very much the opposite of this. If in October 2021 I had said that I wanted to pursue getting information about this, and I had then gone and learned what I could about autism (read books, talked to autistics, whatever), and then I'd looked at myself through the lens of what I had learned and tried to decide for myself, and then had the epiphany, that would have been self-diagnosis. But I didn't do any of that. Once I said in October 2021 that I wanted to pursue getting information about this, I immediately felt like I couldn't figure this out on my own, and that I needed to have somebody figure it out for me. Further, I really knew nothing about autism at that point, and I was very worried about biasing the diagnostic process, so I very much did not learn anything about it before getting a diagnosis.
One of the posts in that compendium above is this one, which says that I did come up with the idea of being autistic myself. No, no I didn't. The post right after it talks about feeling broken and seeking answers; that also isn't me. I thought I was NT. I knew I had frustrations about things and couldn't explain them, but I didn't think I (or anything about my brain) was the cause of it. Absolutely in retrospect I can see the connections with autism, but I couldn't have seen them before my diagnosis, because I didn't know anything.
I want to stick in a piece here that my therapist brought up that at first confused me. She said that some people bristle at being defined as autistic by "other people". I asked what she meant, and she said that it's the idea of a NT evaluator going though diagnostic criteria and making a decision about you as an autistic person. Oh! That's also not me; my autism clinician is herself autistic! Again, my experience here, so it doesn't really occur to me that it might be an atypical experience.
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I wore one of my autism T-shirts on Saturday to the Pig Roast. Late at night, I heard one of my cousins mention it. I spoke up, saying, "Hey, that's my shirt." A private conversation ensued.
He didn't know I am autistic. He also made a similar comment to what one of my friends (one of the original four who suggested I might be autistic) said, that it doesn't make him see me any differently. That's fine; I'm the same person he's known for the last 34 years. It also means he's known an autistic person for his entire life.
He felt the shirt was somewhat aggressive. That was an interesting thing for me to hear. I think that … well, I know that his experience with autistic people is now different than he thought it was, because he now realizes he's known an autistic person – me – his entire life. I think he is used to a certain presentation with autism, and is used to a sort of weaponization of that diagnosis. I had this image in my head from an old video game that looks something like this:
I would be the fencer on the left, the one in a ready position with the sword pointing up; I'm autistic; I wonder what this means about me. He's used to the fencer on the right.
I'm also reminded there of last year's Pig Roast, where I wore a different autism T-shirt, and a different one of my cousins had a conversation about it, and when I mentioned I was autistic, he said "it's not a disorder". Yes, it is, but I don't think that word means what you think it means.
This whole expreience reinforces to me why I want to be the way I want to be. There are two reasons why I really don't want to hide the fact that I'm autistic. The first one is, as I said right after I got my diagnosis, that not knowing didn't really help me any for 45 years, and so ignoring it doesn't seem like the right plan. The second one is that I want to normalize autism. I want people to have the experience my cousin had, realizing that this person he's known his entire life, who he thinks of as, well, just me, is actually an autistic person.
I also mentioned to my cousin (this year) that I don't know if anyone else in the family is autistic, and he said no, not that he knew of. I immediately thought you didn't hear what I said; I said I don't know, because nobody knows, but not because there aren't any. I don't think he was ready for that conversation. I don't think most of my relatives are.
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I have three more things, maybe four, that I want to say that are specific to that compendium PDF, in particular the chronological end of it. I'm just going to quote @giantgnomeanne for these.
- "You come into the conversation to fight for your own experiences, but you don't leave room for growth or other people's." I don't agree with that characterization of me at all. I do fight for my own experiences, yes, but I don't agree at all that I don't leave room for other people's. I see other people not leaving room for mine. I have never said, and would never say, that someone else's experience is invalid for being different than mine. I think in autism there is a lot of room for different experiences.
- "Do you understand what ableism is?" This and the next two are followed by "I don't mean just your basic understand of words", so I don't know that I can answer that adequately; I feel like no matter what I say here, it's not enough. My understanding of "ableism" is that it's a form of discrimination against people with atypical abilities. For example, my elementary school building is ableist, because even today a Third Group student (in my day it would have been Fourth Group and Middle School Math) has to climb stairs to get to class. There is absolutely no possible accommodation. If a Third Group student or teacher had an accident and was in a wheelchair for a month, there would be no way to accommodate. That's a specific example about physical ableism, because those are easier to describe than mental ableism, but that exists, too. Forcing 24 students, 23 of whom are NT, to take a quiz in the same environment does not give the 24th student (who had undiagnosed ADHD) an equal opportunity for success, because she needed a distraction-reduced environment and the other 23 didn't. That's an ableist policy.
- "Do you know what we mean by internalized ableism?" No; I can't say that I do. The only context I've ever heard that precise term used in was to justify discrimination against me in claiming that I was not an "actual autistic person", this again for saying that I disagreed with the statement "[starting out with self-diagnosis] is literally the only way [late diagnosis] can happen", because I was diagnosed at 45 and that was not my experience. So my only context says that that phrase is an excuse to invalidate someone who disagrees with a blanket statemnt you made.
- "Do you understand the greater context of what people are saying when they talk about the stigma around autism?" Nope. I don't understand that at all. As I said a bit earlier, "I wouldn't have included the "cultural stigma" line, because I don't *see* that, probably because I haven't learned to see it." This probably parallels the masking discussion above; I don't know what that is or how to do it because I never learned it. This may also be behind some of my cousins' reactions to my autism; they see a cultural stigma that I don't. While I might have an explanation for that, viz., that I was in an elementary school environment that was unintentionally very supportive of me as an undiagnosed autistic and so I never had the experiences that a lot of autistics, including my autism clinician, had in public schools and other forced social environments, and by the time I was in a public high school I was accustomed to being myself and found it easy to be dismissive of those who would baselessly attack me, that explanation doesn't change anything. It's in a way like the experience with Dr. Huvaere and the students at Joliet West; she expected me to just automatically notice the racial demographics of the class I was observing, and when I didn't, she was horrified, but she'd never asked me to see that. Not the same, I admit, but finding a reason why I don't see something doesn't in and of itself change that I don't see it.
I felt like, and still to some extent feel like, I need a glossary, especially when someone says "I don't just mean do you understand the words". There are concepts here that, typical me, I don't understand the same way someone (and seemingly everyone, though I've gotten better at that) else does. As I am reminded by the infamous "Paul McCartney is PAUL" story, no matter how obvious something is to someone else, there was always a time before someone knew something … just like there was a time for 45 years before I knew I was autistic. Just because I didn't know about it doesn't mean it wasn't so, of course; Paul McCartney was both the guy who sang "Coming Up" and the duets with Stevie Wonder and Michael Jackson AND the bassist in The Beatles long before I knew they were the same person, and I was autistic long before I knew that. There is, and remains, so much I don't know, even a year into this journey. I do know that.
[08:15 29-Jun-23] I want to add a tiny bit to yesterday's dump.
I mentioned yesterday not feeling broken. This post addresses that a bit differently; it poses an question of "Why do I feel so different than everyone else?". I can imagine that being a common question among NDs in general, but that was never me, because I never saw that in myself.
I would say that I had some conflicts growing up with one of my parents (always the same one, to my memory) that I would now characterize as ND vs. NT conflicts, but I didn't see it that way then, and certainly my parent never made me feel like I was weird or atypical. (I know NDs for whom that was emphatically not true.)
At school, everyone was treated as a unique individual, so that was normal to me. I think we all, ND or NT, have a sense that our own experiences are normal at the time, because they are what we know. When my class president said in 2019 that we could all have been autistic, I don't think she was analyzing all 25 of us individually; I think she was saying that in that environment, in that school, autistics and allistics would have been indistinguishable, and we all came out the same way no matter our neurodiversity, because we all got treated as unique individuals. I can imagine, and I gather this is how public elementary schools generally work, assuming that in a class of 25 people everyone is at exactly the same level in English, French, math, science, art, music, SEL, and every other subject. That's crazy to me, and it's not my experience at all.