So, I got an autism diagnosis

[andrewducker]

Yesterday afternoon I got an email from the people who have been assessing me for an autism diagnosis, saying simply "I met with .. and our colleague .. this morning and an Autism Diagnosis has been confirmed."

And I instantly went from "Here's an amusing post I have in my head that I can stick up, complete with quiz." to "I don't know how I feel about this."

So I gave myself permission to just process my feelings for a couple of days, and not post anything until I'd thought it through.

I've been *pretty* sure that I was autistic for about 20 years. Since the first time I encountered online autism tests and went "Hmm, that's a remarkably high score." and then went and looked at the diagnostic criteria. I've spent a fair bit of time on a variety of neurodiverse sites where people gave each other advice, and I've adopted anything that looked like it might be useful. Not because I was sure I was autistic, but because I was interested in any tools or techniques to help me manage my life better.

But I've never been particularly interested in a diagnosis before, because I mostly wanted to be treated as *me*. I felt like I had a setup that worked well for me, and gaining an official diagnosis wouldn't actually gain me anything. There's no medication that would make life easier, no specific reasonable adjustments my employer could make that I wasn't already getting by dint of working for reasonably decent employers who didn't want to burn out their employees.

The reason I went for a diagnosis in the end was that that Jane has a diagnosis, Gideon is going to be seeing an expert to investigate getting him a diagnosis, Sophia is *clearly* masking a chunk of the time, and I was fed up of conversations that started "Yes, it's likely that Gideon is autistic, particularly as Jane has a diagnosis." - it felt like I was covering up whatever contribution I was making, and letting it all fall on her instead.

And, while considering it over the last day or so I've realised that my main worry is that people will no longer see me as "Andy, who is a massive geek, and thinks about things a lot, and plays games, and reads science fiction, and enjoys long walks, and plays with his kids a lot." and instead see me as "Andy, who is autistic and thinks about things autistically a lot, and plays games autistically, and autistically reads science fiction, and enjoys long autistic walks, and plays with his autistic kids a lot."

Which isn't to say that I want to hide that part of me. I just don't want it to be the first, or only thing that people see about me. I don't want to have opinions dismissed with "Well, what do you expect, he *is* autistic."

And I'd hope that my friends wouldn't be that way. Particularly not as I suspect a fair number of them already have suspicions about me in that direction, and a slightly smaller number have suspicious about themselves in that direction. But still, I worry.

It won't stop me, of course. I will be open about this, because I'm rubbish at not being open about everything. I'm just nervous. Hopefully that will fade as it stops being novel, and I can get on with being me, just with an additional label to add to all of the other ones I carry around.

Next up: Meetings with my manager and the head of the diversity and inclusion team! (Although not today because I'm working from home.)

Oh, and you still get the poll:

Poll #29669

Open to: Registered Users, detailed results viewable to: All, participants: 50

View Respondents

Andy's autism diagnosis

View Answers

Well, of course.
26 (52.0%)

I am shocked! And amazed!
5 (10.0%)

SEWIWEIC
19 (38.0%)

Comments

[agoodwinsmith]

Congratulations. By which I mean that knowing officially what you already knew is good.

Also: some of us will be asking awkward questions awkwardly because Awkward is our middle name.

Huh. My metaphor of the day is that this is like when I had my DNA done. Completely Northern European, with absolutely no chance of exotica (except some Finnish) or mysterious millionaires looking for an heir. What I expected; doesn't change anything; but glad it's done.

[fub]

I only see your life through the narrow bandwidth afforded by posts on here and on Mastodon, but still I can't say I am very surprised. But you are not your diagnosis -- to me it is just a footnote to the full richness of your personality, it doesn't change who you are.

[conuly]

I assume anybody I speak to fairly regularly is probably part of the broader autistic spectrum at the very least because, well... autistic people tend to associate mostly with other autistic people. I've said this before, but I'm pretty sure that's how my parents actually met.

[lilysea]

I'm a bit surprised/somewhat suprised/mildly suprised

but I wouldn't go so far as to say shocked and amazed

because autism = more statistically common among science fiction fans; computer programmers; IT support staff and engineers.

But if you had asked last week "based on reading my journal, do you think that I am autistic?"

I would have said "not particularly"

[andrewducker]

I am 91% Jewish. Which is about what I'd expect.

[andrewducker]

Through an autism support group?

[andrewducker]

Thank you.

[andrewducker]

Noted!

[conuly]

LOL, no, they were married in 1979.

No, my mother had been engaged to somebody else - somebody who, the last time we discussed this, she confirmed was definitely not neurodivergent in any way. And she met my father and the next day broke off her engagement to the first dude, called her mother, and said "Keep the wedding date, change the groom". They didn't really meet because of their shared non-NTness, but that's definitely a big part of why they got married.

(The other man married somebody else within the year, so it all worked out for him too.)

Everybody in my mother's natal family is either autistic or very nearly. And my father... well, I don't know that he was autistic, but he had a diagnosis of ADHD long before that was common, and we all know that this is very highly correlated in families.

[hawkida]

I don't know you well enough to have either of those reactions, but it is entirely unsurprising when various of my peers goes through this. How was the assessment? Did you feel along the way like this was going to be the outcome?

[channelpenguin]

I've known you for ... Uh 30+ years. So, not surprised, but you aren't the most obviously autistic of my friends or colleagues. Most of whom ARE, whether diagnosed or not. It's almost a requirement in our profession, no? I mean, it's hard to think of more than a few DEFINITELY neurotypical colleagues over my entire career.

So. Nice to know but makes zero difference in my opinion to you as a person or in how I deal with you.

I've never had a test, but I can guess the results.. lol.

[andrewducker]

My parents were both engaged to other people when they met too.

Funny how that happens!

[andrewducker]

I thought it was, like, 85% likely. But I wasn't sure, and so felt quite stressed the day I was waiting for the answer.

The assessment was just fine. Although it was four hour-long sessions each a week apart, so it stretched out.

[andrewducker]

I could also make a guess :-)

And no, I've known many people who were more obvious than me. Which was what was making me nervous while waiting for the results!

I'm intrigued to get more detail at my follow-up appointment next week.

[f4f3]

I think you already know that having a diagnosis doesn’t define you, anymore than my diabetes diagnosis defines me. It gives another lens for me to look at myself through, but I’m pretty sure none of my friends think of me as “Michael the Diabetic”. I can’t claim to be typical, but it doesn’t change the way I think of you at all.

[jack]

Oh gosh. Congratulations, good luck introspecting!

A lot of people I know seem "normal geeky" and quite a lot of us are autistic. Sometimes I see things that make me guess. But often I can't tell at all from the outside, although it can be obvious if they talk about how they experience daily work or whatever.

Some people are more sure they can tell, and ironically I suspect that that is usually not from more certainty, but from better guessing from partial information, of being more willing to notice that some particular habit is _often_ correlated with someone being autistic and take a leap, than having more evidence.

I am not at all surprised about you, but I had no idea either, I can think of some things that COULD be tells, but wouldn't have thought them out of place from someone normal geeky either. I assume this is obvious but I don't think of you any different at all, most people have a variety of things under the hood in their brain and I don't need an underlying understanding of everything about how we interact to like them.

FWIW I have been introspecting about this somewhat. I thought about classic autism cluster traits in three categories[1]:
1. Sensory sensitivities. These aren't unique to autism, but there's a big connection. And they're clearly SOMETHING. It's harder to be sure with the "ways of thinking" but if you have BIG SENSATIONS about light fittings, or crowds, etc, it's hard to say "oh I don't know if this is a thing" once you know that some people have the same thing. I think I have things like this at only deniable levels.
2. Ways of thinking. More systematic, more black and white, less "seamlessly fall in with what someone expects without ever talking about it". It's hard to tell if you're different to other people, but for people who aren't "obviously" autistic but "seem autistic" these can be the most important. I think I have a lot of these but I still don't know how much. It seems like when I'm ok, it doesn't matter that I tend in these directions, but if I'm depressed or have problems, these are often how the problems manifest. But I'm not sure if that's "I wasn't conscious of how much I was masking" or "Everyone needs to build communication with people, but if it fails they fall back to different ground states."
3. Executive function (initiation energy, "blocked from doing thing", autistic inertia, hyperfocus sessions, etc) and emotional dysregulation (BIG emotional reactions, RSD, etc). Similar things are in autism and adhd. These were the things I sought help for and had treated. These are more obviously "a problem" and often things people say "me too!". But could be autism, or an overlapping condition or both.

[1] I am aware of the irony :)

[cmcmck]

As you know I worked with autistic young people and the thing about it is that it is only a problem if it is perceived as a problem.

I also know that a diagnosis can be a huge relief!

[andrewducker]

Thank you.

[jack]

(I don't know if it's more obvious for people you know in person :))

I'm interested to know if your manager and inclusion team have anything to say. I don't know if there's anything you want to be different at work. I have talked to some managers about this, and they've generally been non-judgemental but not had any particular idea about it, and I haven't known if there's anything it would have been sensible to ask about.

[andrewducker]

It doesn't feel like a relief yet, but I can feel things reconfiguring in my head. I'm intrigued to see where it ends up.

[andrewducker]

I think my main thing is that it's a small company, but chock-full of geeky types, and I'd like to encourage others to feel that they can come forward and ask for reasonable adjustments. So by being public about it I can hopefully help with that.

[darkoshi]

Lilysea's answer is about the same as how I see it.

I suspect a lot of the people I deal with at work, as well as my dad and possibly Qiao, have a good chance of being autistic to some degree, but they all seem normal to me, so it's not something I can distinguish well. Also, I am probably the most neuro-divergent person I know, yet I don't particularly think I have autism (I'd say it is 30% likely) as opposed to something else.

[mtbc]

It's probably indeed good you have the diagnosis at least, yay for you for seeking it.

Autism's a broad, diverse tent and plenty of people have at least a toe in some corner of it, at least among the social circles I know. I wouldn't typically think of it as defining people any more than I'm defined by, say, my gender or whatever. People are lots of things, you included.

[channelpenguin]

Yes. I come from a family of engineers on my father's side. Like the whole extended family including the women (though my uncle married a teacher and their kids seem neurotypical). My mother also doesn't really "fit well" with a lot of social stuff and is highly musical...

[mtbc]

I hope that it helps explain some things for you, even if they weren't burning questions.