Not Ashamed: Autistic
If you haven't already, please read the introduction post. That will give you context for this page.
(Note: I wrote this just a few months after my diagnosis, and I've now had about 18 months of more research, education, experience, etc. Just as soon as I find some time, I'll have a follow up to this post.)
When I got assessed and a qualified medical professional at the University of Washington Adult Autism Centre diagnosed me as autistic, I made a quick post on social media. For the most part, replies were:
- That doesn't makes sense. You don't seem autistic.
- That makes sense.
- How do you fix it?
As I've thought about what I would write in this post, a good percentage of the loads and loads of possible things can be grouped under one or the other of those replies. I'll try to use those to keep this somewhat organised.
That Doesn't Make Sense / You Don't Seem Autistic
There's quite a bit online about how it is that those born female are under-diagnosed as autistic. I spent hours one night searching and reading. If you just want a link, this page wasn't too long and will probably do it for you. But if you or someone you care about might find this relevant to their situation, I'd urge you to hunt down more reading materials.
One of the things you'll read about is how, in addition to the gender bias in the way symptoms are defined, physiological differences and socialised differences between males and females both contribute to the perception that I can't be autistic (and, apparently, my higher IQ helped as well). Plus, there are behaviours you don't get to see because I've learnt to be careful.
For the curious, some of my bigger challenges, but certainly not my only challenges, are:
- Sensory overwhelm issues, which can take far less stimulus than you'd expect. They manifest in different ways and to different extents, and I'm fortunate that I had some good instincts in terms of ways I structured my life and time to minimise the impact of that. The responses vary based on the situation, but they are pretty typical of those on the spectrum.
- A diminished capacity for dealing with executive function demands...which is part of why I love and strongly prefer to plan things in advance. Fortunately, I have become practised at pushing through a lot of the impact of this, at least to an extent that others rarely have to deal with it. But I'm definitely absorbing the full cost in private.
- How quickly I get worn out by these things I've listed and some of the other challenges...though at least now I understand why certain apparently unremarkable days leave me exhausted by afternoon. I recently read this post on a site that seems to have plenty of entries relevant to me, and I'm trying to apply this to make sure I get as much productivity as I can out of my days.
A common approach to voicing doubt, especially in person, is to ask me what sorts of things make me think I'm autistic. When I tell the person, their response is that they do that or feel that too. However, their tone makes it clear that they aren't seeking empathy but, instead, to cast doubt on my "claim" that I'm on the autism spectrum. I have used my mad Paint skillz to show you some parallels to what it is like when people do that. Hopefully, these moving works of art will inspire you to never do that to me again.
Of course, my bottom line for all of you who don't believe it's possible is this: a qualified medical professional at the University of Washington Adult Autism Centre diagnosed me as autistic. I'm pretty sure the professionals at UW Adult Autism are a little better-qualified than everyone I know to make the call on that.
That Makes Sense
Closest friends, friends who are also on the spectrum or are related to or in relationships with someone on the spectrum, and those who know enough about it to have managed to see some of the signs in me have noted that they weren't surprised. For my part, whilst I wasn't emotionally wedded to a particular diagnosis, I wasn't surprised either. Even before I'd read the chain of things that led me to suspect I was on the spectrum, I'd occasionally made comments about certain of my behaviours like, "I guess my autistic side took over." I didn't mean it as disrespect or even necessarily as a joke. I think I was quietly poking at the thought long before I consciously considered it. Once I started researching, there was an ever-growing list of reasons to believe this was the case, including many things I'd never have considered part of the evidence. A strong enough list that, when I learned the hard way how difficult it is to find people willing to diagnose adults, I was making peace with the idea of relying on self-assessment for this.
I've worked hard and been as careful as I could to cover up most of the signs that others might see, to keep the behaviours private. But they are there. And they've been there for a long time. Now that I know much more about what could go on that list of signs, I can confidently say that there have been signs as long as I can remember (oh, the stimming I did as a child...that's been coming to mind a lot lately). Which isn't to say that anyone ought to have caught them. As I've noted already, and as the articles you can find will note, even the professionals don't necessarily catch this stuff as often as they ought. But as I sat with the very kind and careful woman at UW Adult Autism, as she asked careful and neutral questions, I realised how much energy I'd put into building the person you see. If there's anything we humans figure out quickly, it's how dangerous it is to be unlike the others in our tribe. I have always been as authentic as I could sort out being, but I have, as I've said, done all I could to try to monitor and squash my behaviours...especially when anyone else is around.
How Do I Fix It
I know that anyone who asked something like this wasn't intending to be insulting. So, if that was you, don't fret. I forgave you immediately. Whilst it's changing, the conversation about autism has always been more about what a horrible thing it is (and, look, I know I'm lucky to be where I am on the spectrum; I know there are some people where the bad vastly out-strips the good) and how we have to fix autistic people, to save them and their families. And I absolutely agree that some behaviours and issues are negative and answers are necessary. When she confirmed that I was on the spectrum, the woman who assessed me also noted that I'd done a great job of finding strategies and coping mechanisms. (Gold star for having a good reputation in my profession and always managing to take care of myself and my commitments!) I'm sure some of what should happen is that society needs to make some changes, especially given it now looks like about 1 in every 60 persons is on the spectrum, but I also know that some of the answer is me making choices, being aware, and so forth. That said...
I have done a good job sorting out the concessions, the strategies, the coping mechanisms that allow me to live a life that I enjoy and that keeps me seeming basically typical to most people. I like myself. And some of what comes with this differently-wired brain of mine is good; at least I think it is. I'm not really looking to fix myself because it's possible I'm no more broken then you, maybe just broken differently.
If that's the case, why (you might ask) did I want an assessment at all? Fair question. You can find some good reasons at the end of this article (which is a good read over all), but I had reasons before I ever found that article, most of which are echoed there.
I want to make clear that my motivation was not to have an excuse that would let me get away with stuff. I wasn't looking for sympathy or a license to behave badly. I wasn't looking for approval to throw my hands in the air and play the victim. As pointed out previously, I'm not a victim. I want to be a self-sufficient and reasonable person. And there are more useful things in this world than sympathy. If you are or were suspicious of my motivations, you either don't know me or have forgotten what you do know about me. Got it? Fab!
I think that my love of self-knowledge is well-known. That was one of my main drives. And when I got the assessment, a lot of things fell into place. A lot of things made sense. "Oh, that's why I do that!" In cases where the thing that fell into place was a negative thing, I could now more easily forgive myself, breathe through it, not pile negative feelings on top of what was happening. (It wasn't things like letting myself be a jerk, more like understanding why certain things made me feel so worn out or frayed.) The more I've researched, the more I've found out. This means that I feel empowered, even as I realise my constraints and challenges.
One of my other motivations was that I understood I wasn't typical. I knew that some of the things on my list of "what seems off about me" might be a little worrisome, especially if they were going to get worse. So, I went in with the intent that, if it wasn't autism, I might want to figure out what was going on. Just in case there was a "real" problem. So, in a way, I was relieved that I was autistic.
And I hate knowing that, based on things others on the spectrum have run into, there are still people--including employers--whose behaviours lead to people on the spectrum feeling they need to hide that truth about themselves. (I just read advice on one of the bigger forums, urging people on the spectrum not to disclose their situation until after they had a firm job offer in writing, and then read some disheartening bits at the end of this Cracked piece. Both of these are very recent, not just outdated fears.) Some of the behaviours that my atypical wiring leads to aren't things I'm proud of, but I am not ashamed. Whether or not you believe it, I'm autistic. And I'm actually okay with that.