Wait, you found out you had autism at 45? How could that be?

I'm going to point out that that's an unhelpful way to ask that question. The answer is "Yes", but there's an implication there that … is unhelpful. Early on in this process, I had a prediction that if I found out I was neurodivergent, I was going to be very angry, because … exactly the mindset that yields that question phrased that way. How could this be? How could this have been missed for over 40 years? Who is responsible for this! Yeah, so nobody is responsible, and calm the <expletive /> down.

But … how did you find out?

Aha! That question, about the part of my journey that got me here, from "I'm neurotypical" to "I'm NOT neurotypical", I can answer, and would like to.

I think the only way you ever figure out anything if you're neurodivergent is that somebody who knows more than you do notices something and tells you. Of course, you also have to notice, and listen, and that's not so easy. But what doesn't work (in my opinion, for me) is self-diagnosis. I have a DSM-IV; I can look up what it says and try to decide that I meet the criteria for X disorder. (An aside: "disorder" is not the greatest term, as it has negative connotations that are frankly unhelpful. When you see the word "disorder" in a mental health context, try to substitute "atypical", because that's all it means.) I've done that at times, especially in my late teens and early 20s, though not for this particular disorder. It's too easy to convince yourself of "yes" or "no".

I had, again back in my late teens or early 20s, a few friends who got various mental health diagnoses. Some of them would say, "hey, this is me; maybe it's also you". I learned not to listen to them. I mention this because while I don't remember anyone back then suggesting that I was autistic, if someone had, I wouldn't have paid it any mind.

The first time I remember someone mentioning this to me directly was from somebody I've known for a long time, though as with most of my relationships, there have been strong points and weak points. There were years I would not have considered her my friend, and then she came back. It happens. Anyway – and I don't remember when exactly this was, and trust me I have tried to figure it out – STOP.

Sorry. Um. It's 17:41 25-Apr-22, and I just found this old LiveJournal post, which stopped me dead in my thought process. I forwarded it to my clinician. That's crazy.

Anyway, sorry about that. As I was saying, there was a time, which I now know was over 11 years ago (!), when there was this … EDIT: I FOUND IT! Monday, July 9th, 2007. Who knew. And I can now say exactly what happened! I'd made a LiveJournal poll (that you probably can't see), in which the second question I asked was, "Ask a different question you'd be embarrassed to ask me." So this friend of mine responded with "Do you have Asperger's?" That's an old name (did I mention this was 2007?) for a particular flavor of autism spectrum disorder; I looked it up at the time in order to learn that. Incidentally, my clinician says that if I had been diagnosed a decade ago, that would have been my diagnosis, so when you read this, she-who-asked-me-that, the answer was "yes", though I didn't know for almost 15 years after you asked.

All right, so that happened, and again I didn't really think anything of it. (Though apparently I did.) Nothing else happened in that realm for years. The next thing that happened wasn't directly about me; it's why I say that I've had this suggestion from 6½ people and not 7. So I was at an alumni event at my elementary school, and my class president was talking to an alumna from the class behind us whose brother was in our class. (I feel a little bad at this point because there are people who would be able to identify who I'm talking about, and I don't really want that, but I have no other way to say it.) The alumna mentioned something about her brother (the one from our class) being autistic. Okay, fine. Then our class president said, "Our entire class could have been on the spectrum." (An aside: "on the spectrum" is a euphemism for autism, as autism spectrum disorders are, well, "spectrum" is in the name.) Now she wasn't talking to me; she probably didn't realize in the moment that I'd heard her (I was the only other person from our class who was there). But it stopped me: wait a minute, I thought; I'm one of those people in "our entire class"! Again, it wasn't said to me directly, but it kind of bugged me; why would she say that? (I'll have more to say on that topic, about the school and some of the consequences of attending it, later.)

I put a <hr /> above this paragraph because there's a timing issue here: what happens next (and I wound up writing this in a much more temporally-linear fashion than I thought I would) happens much more quickly than the previous forever.

So fast-forward to about mid-September of 2021, and we have this conversation excerpt with a friend of mine (who I have never questioned cares about me immensely):

Her: That's a tricky one for how your brain works vs the colloquial usage.
Me: That last sentence is like my entire life in one sentence.
Her: I've noticed. I wonder if getting an ASD dx would be helpful for you at this point. Maybe there are services and understandings in therapy and within your relationships that could be helped with that.
Me: Do you think I have an ASD? (Yes I realize you're not a clinician.)
Her: Short answer: yes.

I was pretty dismissive of what she said there, honestly. Contextually it wasn't so good. It got me thinking about it a little, but not in any ways that were particularly healthy. Basically this was a real period of negativity on my end; oh, if I'm neurodivergent, and that's the source of my communication problems, then I'm the one that's broken and everyone else is right. That's not fair, I know, but it's an easy way to think, especially when you've been having communication problems with people for years.

A Turning Point

Something changed when the calendar flipped to October. You know how I said I have a friend who has been kind of off and on for over 25 years? I have a few, actually. This was the day (the first of October) that another one talked to me, out of the blue, in what turned out to be a very consequential conversation. It happened somewhat by mistake; she thought that at some point I had said something about being neurodiverse myself, which I had not. I told her I believed myself to be neurotypical, but in that conversation, when I now had 3½ very diverse people saying something, it got me to feel like if it were the case (see what I did there? still thinking contrary-to-fact), then I wouldn't so much be broken. I cannot overstate how <expletive /> important that was. The conversation was in Facebook Messenger, so I have a log of it. (I love logs. Logs let me go back and look at the words again, and say, "Yes, this is exactly what she said." Now for somebody with autism, that can be good and bad. But I digress.)

The week that went by after that had me thinking. I'd been seeing a therapist myself for a couple months by then, on Mondays, and the next Monday I talked to her about it. It had gone from "what's that" to "huh" to "I'm not that" to "can we explore this"? By the end of that week, I wanted to go further: I wanted to find out if I could get evaluated for this. (Does that seem sudden? Because it did to me.) Saturday at the end of that week my wife and I had gone to couples therapy, and I wanted to bring it up. I had something else minor that I wanted to bring up first, and I did that, and then she had a topic she wanted to talk about. I listened, and I started grinning. (No one could see it, since I had a face covering on, but I was.) She was talking, and fidgeting, and full of trepidation, and it sounded like she was about to say what I'd come in there to say. Come on, I thought, grinning; say it. Say you see the same thing. This is about to be so much easier. Say it! She did. She said that she (and other people who had talked to her and not me) had a concern that I might have an autism spectrum disorder.

Four!

I held up four fingers on my right hand high in the air and shouted, "FOUR!"

There would be a five, in January, and a six in March, but once we got to four, all systems were go.

Now let me tell you that actually finding a clinician for an autism evaluation, as an adult, is ridiculously hard. I first made an appointment with a GP to get a referral to Psych. I didn't get in to see the GP until 24 November, and then the Psych referral didn't get me an appointment until April. Then in early December I got a call from Psych, saying that they only evaluated children, of which I am not one, and giving me contact information for three third-party cinics to try to contact. Only one of them had a 217 area code, so I tried contacting them. Then my wife tried contacting them. Then I tried again. [I eventually became convinced that they don't actually read the e-mail sent to the address on their website.] Finally we got word near the end of January that they weren't accepting new patients. They gave me contact information for another clinic here in town, and I tried contacting them multiple times. Eventually I heard back from them, and while I could get in to see them, they were prohibitively expensive. My wife meanwhile contacted half a dozen other clinics around the state and got nowhere: some combination of not taking new patients and not serving adults was the story everywhere. Back to the drawing board. We tried another clinic from the list I got in early December, and this turned out to be one that could help me.

My first meeting was on 22 March. There's an adage in teaching that says the teacher knows what the grades are for all her students after two weeks, and then spends the next 14 weeks justifying them. I don't think that's accurate a lot of the time in teaching, but I think that's how my evaluations went. My clinician clearly had an idea after that first meeting, but she wouldn't tell me what it was (as I was concerned about biasing myself). The rest of the meetings and batteries of inventories and interview questions were about gathering more data for her, in some cases ruling things out and in other cases supporting the eventual autism diagnosis. As I write this 20:30 25-Apr-22, I've had possibly my last meeting with her (four days ago), and I've heard what's going in her report, though it hasn't been issued or signed yet. It probably will be by the time you read this.

Now What?

I don't have answers for that. This is a lot to process, even if I've had seven months to prepare for this possibility.

Addenda

• [10:55 29-Apr-22]
  I glossed over a bit this idea that clinicians aren't interested in adults. That's not entirely a fair characterization, but from the point of view of an actual adult seeking services, it is how it looks. Most of what I heard about this comes from my wife, who as I mentioned spent a lot of effort trying to find clinicians for me. Basically, as I see it, the main arguments clinically for finding an autism diagnosis are about helping the patient in a tangible manner. If the answer to "why do you want to know this" can be addressed tangibly, e.g., you're looking for some particular accommodations at school, then the clinicians are anxious to help you, because it's important that that happen OMGnow. For someone like me, for whom the reasons for wanting to know about this are all intangible (at least that's how it feels by comparison), … it's not that clinicians don't care, but we're not a priority in a realm of limited resources.
  Now that does make sense to me, and I don't want to take away from someone who needs this for an equal opportuinity for success, where it would have a genuine observable effect right now. That doesn't mean it wasn't frustrating for me, and I think eventually finding an autistic clinician who was hersef diagnosed as an adult helped, because she could see where I was coming from.
• [11:05 29-Apr-22]
  Also, let me say from what I know from all my education training that one reason I am glad I wasn't identified or diagnosed as a child is that I didn't have to go through the IEP process as a student. You might think that's looking for a silver lining a bit too hard, but remember that the whole principle of an IEP is to give the student an "appropriate" education in the "least restrictive environment". I had the least restrictive environment without that added burden (and yes it would have been a burden). I don't see anything that would have helped me there. I didn't need extra time on the ACT. (I got a 33 ACT, thanks.) I didn't need a distraction-reduced environment. I didn't need those things that other neurodivergent people do in order to have an equal opportunity for success. That wasn't me. I wouldn't have understood how much people actually did need those supports back then, and I wouldn't have put up a fight about any of it (since that is also not me; have I mentioned that I am really bad at self-advocacy?). It would have been an unnecessary (and unhelpful) burden on me (and on my parents and teachers, who would have been trying to do what was best for me and quite possibly unable to figure out what that was).
• [10:53 14-Apr-23]
  Another addendum a year later? Yes. I mentioned way back in the very first paragraph that "what doesn't work (in my opinion) is self-diagnosis". That's a touchy subject, for some good reasons, and I need to address what I said a year ago. I do not mean to say that self-diagnosis is invalid. It would have been invalid for me, for all the reasons I listed in that paragraph at the top of the page. I could not have done that. I could not have believed anything I decided myself. I absolutely needed to have the clinical validation (that I got twelve months ago), and I also was so afraid of biasing that evaluation that I wouldn't have been able to learn the things I have learned since without it.
  That said, and even observing that I am 4-for-4 on the Big Four of Privilege (male, white, heterosexual, cisgendered; yes, I could now say that I'm only 4-for-5, adding neurotypical to the list), it took me a lot of effort, frankly more effort than I was willing to put in, to actually get in to see a clinician, again for reasons that I've listed above on this page. Let me say that again: it took more effort than I was willing to put in. If I hadn't had someone else also putting in effort, I would never have gotten to the point I did. Now if I can say that about myself, imagine any number of people for whom this would be even harder: whether it's people who can't afford (in money or time) a formal diagnostic process, people who (for a host of reasons; see above and add privilege) can't get a clinician to even see them, etc. If those people feel like they can look at themselves and decide they are autistic, I do not wish to question or belittle that. I think there are a lot of people, and I'm one of them, who can't. But that doesn't mean everybody. Nothing about autism means "everybody". Have I mentioned that I still, even a year later, have this pervasive fear that I'm "not autistic enough," even though logically I know that's preposterous? Does autism influence everything about how my brain works? Yes; it is a part of me. I have a T-shirt that says "it's a different operating system"; it's impossible to disconnect from being autistic. But that still doesn't mean that I have every trait 80% of autistics have, or that I have the same thoughts and ideas as 80% of autistics, even if there are things that 80% of autistics agree on. So it's this diversity within autism that logically makes this impossible, this idea that everyone … well, anything.
  So I needed to adjust my earlier statement. When I said what "doesn't work (in my opinion) is self-diagnosis", I was speaking from my own experience with neurodivergence; it absolutely would not have worked for me, and I think there are a lot of people like me who need to be told, who need outside observers to observe something, because we're not going to notice the divergences in ourselves, because we've been living in our own brains for so long. That's not everybody, though, and there are complicating issues I've mentioned here. I've edited my statement in the first paragraph to now say "what doesn't work (in my opinion, for me) is self-diagnosis", because I was speaking "for me" there. That caveat should apply to everything I write or say about this, certainly, but as I know (and didn't know when I wrote this initially) that this is a sensitive issue, and with good reason, I wanted to clarify my words.