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.

[andrewducker]

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

[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.

[andrewducker]

Thank you.

[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.

[andrewducker]

Through an autism support group?

[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]

Noted!

[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?

[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.

[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]

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.

[andrewducker]

Thank you.

[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 :)

[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.

[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]

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.

[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.

[andrewducker]

Thank you!

[simont]

SEWIWEIC: I've never managed to get any kind of intuitive idea of where the autism spectrum stops, and where "geeky but officially neurotypical" gives way to "officially a bit autistic but you might easily not notice or care". So there's a large range of people for whom I'd be equally unsurprised to find they had been officially judged to be autistic or not. Even more so if I only know them online.

[andrewducker]

It's an interesting one. There's clearly a lot of crossover, and also they aren't the same. I hope someone is doing some research!

[doug]

I'm not particularly surprised but I wouldn't have said I expected it beforehand. Partly because I know you mainly online and it's hard to assess that way, but mainly because I don't think it makes that much of a difference to how I'm likely see you. I have ... a lot of geeky friends and relations, some of whom are really quite autistic to the point they really struggle to thrive in neurotypical society, some of whom are not remotely autistic, and most of whom are somewhere in the middle. They're all good, and are very much the fine individuals that they are.

If it does make a difference it's more likely to be as a useful positive example - "oh, [this person] seems a bit like Andy in [this regard], and he has an official diagnosis, so yeah maybe [this person] would count as officially autistic too, if that were a thing that might help them".

All the best in continuing to be the excellent you that you are! And hope the official diagnosis gets you what you're hoping for.

[andrewducker]

Yes, I'm hoping to be a positive example at work. And thank you!

[bens_dad]

Welcome to the club.
(OK, my diagnostician disagrees with DSM-5 so my diagnosis is Asperger's Syndrome).

When I was diagnosed aged 48 my reaction I realised that I would have found it difficult to believe a negative diagnosis. I was the second of my small team to be diagnosed and a third was regularly assumed to be (although not to her face).

[andrewducker]

I didn't realise that diagnosticians were allowed to disagree with DSM-5. Professionally, in any case!

And yes, my next question at the follow-up meeting was going to be "And why not?" if I didn't get a diagnosis.

[stormclouds]

As another recently diagnosed autistic person I'm starting to realise that what I thought of as "normal", and who I thought of as "normal" is rather skewed. "Normal" to me means neurodivergent like me. I know so many other autistic and/or otherwise neurodivergent people that we are the norm. As a result, I view you as "normal" even though society doesn't. Does that make sense?

I hope the diagnosis is helpful. I found it gave me ways to describe what had previously been indescribable without feeling like I was appropriating from autistic people. It also gave me permission to be kinder to myself. "There is a genuine reason for why I'm finding xyz difficult right now. I can stop/leave/take a break/ask for help."

[andrewducker]

I'm really glad it helped you.

And yes, that makes total sense.

[rhythmaning]

Both the post and the comments are very interesting!

My response is probably along the lines of "so what?" Not in a dismissive way, but a genuine curiosity: what will having a diagnosis change?

I'm also curious how it might change others' perceptions of you (especially mine). I don't think it should at all, but it might. Which highlights possible bias (or even prejudice) against disability.

As far as I can tell, the prevalence of autism seems to be far higher then it used to. At the bookshop where I volunteer, several young people who I wouldn't identify as autistic (noting I'm not trained to diagnose!) in fact have diagnoses of autism. I presume this is because diagnosis is easier to come by and more openly discussed.

And also perhaps because I hang out in autism-friendly spaces, particularly online: Mastodon in particular seems to have a high number of people who identify as autistic.

I'm be interested to see how this develops - what, if anything, you do with the diagnosis! And of course, the very best of luck!

[andrewducker]

I think that in the past there's been a lot of conflation between "autism" and "autism with various impairments that are somewhat common comorbidities". And movies like Rain Man haven't helped on that front, or the way the media would highlight people like Stephen Wiltshire as "Their brains are all broken, but look at the amazing things they can do!"

And so a lot of people fit the criteria, without it being at all obvious from the outside, particularly if they've learned tactics to cover up their issues.
https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

And, importantly, a lot of the stuff in that diagnosis isn't actually a problem for autistic people day to day except when they are pushed into fitting into neurotypical modes of being. Leave them to do things their way and a lot of the time they'll be fine.

[gingicat]

I don't know you in person and you don't share much of how you react to things. I did notice that I agree with nearly everything you put in the tags for links to articles about autism.

My impression is that sharing your diagnosis gains you community (because others say, with relief, "same!") and an explanation of why you need accommodations.

PS. If I say "I'm the parent and spouse of autistic people" I get IMMEDIATE side-eye from autistic people and their allies. If I say "I'm the neurodiverse parent and spouse of autistic people" then I get given a chance. So that may help.

Ask Jane how she does it. She may have a strategy for determining who's safe to come out to.

[andrewducker]

The thing about "I'm a parent of autistic people" makes total sense to me, sadly. Considering the number of unfortunate stories I hear on that front. Getting your in-group-ness in quickly strikes me as a good idea.

[mellowtigger]

Congratulations? I hope diagnosis can settle any lingering questions about "Why did that happen?" in strange periods of your life. I hope it also provides new strategies for facing the future. ;)

P.S. What is SEWIWEIC?

[andrewducker]

Thank you!

And "Something Else Which I Will Explain In Comments". It's an ELA.

[dewline]

Okay.

Still trying to get my own situation understood/sorted/whatever we call it. Getting tested/diagnosed around here is...problematic. For all that we're getting right about health care in Canada, there are still people who take offence at the efforts being made at all and have organized to roll back the progress.

Why?

Money, of course.

[andrewducker]

I'm sorry that vandals are tearing down your systems. I hope that you can get a diagnosis soon.

[firecat]

I am only one of your imaginary internet followers, so I wouldn't say "of course," but in my experience, it's mostly neuroatypical people who do awesome things like maintain an interesting linkdump for years (and I really appreciate that little bit of reliability in my life). And so many of my people are so similar to "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 so many of them have a diagnosis of some flavor of neuroatypical that I am not surprised you now have a diagnosis too.

I don't have a diagnosis or a particular interest in seeking one at this time, but given the people I like to hang around with, I probably would come up somewhere in the N-dimensional space that counts as neuroatypical if I did.

LLAP

[andrewducker]

I'm delighted to provide an ongoing, largely reliable, service :-)

[beckyc]

Congratulations (I think/hope?)! I was torn between Well of course and SEWIWEIC because I only know you online. But in geeky/technical circles it’s not at all surprising.

I hope that you find it useful to have the diagnosis and that work are helpful!

[andrewducker]

Thank you!

[mountainkiss]

Hello. Thank you for sharing this. I hope you are okay.

I would like to ask you some more questions about this but *only* if this is genuinely completely okay for you.

[coth]

I hadn't stopped to think about whether or not you might be autistic - I know lots of people who are, and lots of people who aren't, and I didn't know about the children or Jane or have any particular reason to think about it.

I think those are awesome reasons for getting a diagnosis. I hope it helps your family going forward and allows you to help them directly as well. I'll be very interested in your reports of what happens next along these lines, should you choose to make any.

[andrewducker]

Thank you!

[greenwoodside]

Coincidence. This morning I phoned the doctor's surgery and asked to be assessed for autism after brooding around the topic for sixteen plus years. Had a short talk with the doctor an hour later where I described the reasons I thought I might be autistic. (No friends at school, one autistic friend at university, cousin diagnosed with autism as a child, sensory issues relating to sound, difficulty following/participating in freeform group conversations etc etc)

I picked up the assessment form after work and it's sitting in my bag now.

Anyway...thank you for writing this. You come across as a great guy and I love your links. I hope the diagnosis is useful.

I know exactly where you're coming from about not wanting to be autistic Andrew – I feel the same about not wanting to be autistic greenwoodside. I've often asked myself about how I perceived my university friend, and if that changed when she told me she had Asperger's. I think it did, then. Now after years of reading blogs and posts by autistic writers, I think it would be more of an 'eh, and the weather in Wales was rainy today'.

[andrewducker]

Than you - and I hope that you have success with your own assessment, and that it gives you what you need.

[supergee]

As an ADDer who considers Aspies separated brethren, I congratulate you on passing your test.

[andrewducker]

Thank you :-)

[snippy]

In the "something else" category, it's just one of the things I now know about you. Given that (likely due to memory loss) I don't remember how we became acquainted, I don't actually know much, so it's not going to change how I think about you except by adding one more descriptor to "my friend Andrew (I didn't know you went by Andy) who lives in Scotland with a partner and two kids."

[andrewducker]

That makes sense.

I have no idea how we became acquainted either. Or if I also have you on other social networks under other names! The lack of an ability to make notes on people doesn't help :-)