• Category Archives Actually Autistic
  • But you used to…

    (I know some people would say an author should keep their blog all writing-related. If you’re one of those, skip this post.)

    Three years ago today, one of the lovely medical professionals at the University of Washington Adult Autism Centre confirmed that I was on the spectrum. In three years, I’ve learned a lot, I’ve gotten to know myself better thanks to this new self-knowledge, and I think I’ve changed my attitude and thoughts about Autism and disabilities for the better.

    Liz Lemon gives herself a high five

    Mostly, just like allistic people (aka people who aren’t Autistic), I find that my brain wiring presents me with good stuff and challenges. And, whilst I don’t love the challenges (which come from my brain but also from society), I wouldn’t want to stop being Autistic. I’m glad I’m an Autistic person.

    As I’ve thought what I might post to recognise today, and as I’ve pondered maybe doing more regular, nakedly honest posts about how Autism plays out in my life (since every Autistic person is unique), there’s one topic that’s come to mind over and over, probably because it comes up in conversations over and over (I even occasionally post a shorter form of this on FB when there’s been a rash of unhappiness thrown my way). A thing that, at least to me, also seems most relevant in the harmonious function of my relationships with others. It’s also a topic that isn’t unique to my Autistic experience. I have seen it come up with all sorts of people who have life changes, especially ones related to mental or physical health or function.

    I don’t speak for all those other people; this post is about me. But maybe it can also help you consider a different perspective with others as well.

    The issue can best be summed up by the phrase most often uttered at me in regards to said issue: But you used to…

    Before I had a diagnosis to tell me that my brain was wired a way that wasn’t typical, I just assumed that life and interaction felt this way to everyone. I assumed (and had been told) that maybe I was “too sensitive” and just needed to suck it up. I, frankly, showed myself mainly strict, sometimes brutal, insistence on doing what “normal” people did and mostly didn’t even consider applying self-compassion. Even though I had decades of lived experience, of trying to make myself just get used to things, of failing to get used to things, I didn’t stop pushing. Even though others didn’t appear to have some of the difficulties and discomforts I have, I just kept pushing because maybe, like me, they were all hiding the same discomforts and upsets. I adjusted slightly as I learned more about what it meant to be an introvert (which I am), but only very, very slightly. Not enough.

    Here’s a metaphor I like to use to explain:

    Let’s say you have grown up in a home where your parents always put food on the plate for you rather than you doing it yourself. From the time you were too little to remember, they have lovingly heaped a plate with too much food and given it to you at every meal. They don’t know this is too much, and so they insist you eat every bite. You grow up assuming that eating just involves discomfort. (You know that discomfort after, say, American Thanksgiving or a really lovely Christmas dinner? Imagine you feel that after every meal, so you assume it’s normal.)

    A table heaped with every imaginable holiday dinner food

    You know your parents love you (and the food tastes good), and you know they’ve got years more of lived experience than you, so you don’t have any reason to question it. This is how one must eat, and this discomfort is just a part of life. When you move out, you just keep feeding yourself those same portions. That’s typical (aka normal), right?

    But then you get in a relationship, and they want to cook you a meal. When they bring you a plate, there’s less food. You don’t want to be rude, so you just go with it. The food is good and the intentions are great and…Oh, you don’t feel discomfort after. And you also don’t feel hungry. Interesting. So, you go home and you try making those smaller portions your new normal. You start to pay attention to other people and portion sizes. You realise that, in fact, the typical feeling after a meal isn’t discomfort.

    Maybe you occasionally humour your parents when you go back for a visit, or you still occasionally over-eat when something is just so good you decide the consequences are worth it this time. But, overall, you honour your body’s actual needs and capacity and, while you used to eat whole large pizzas in one sitting on your own (a thing I used to do both actually and metaphorically), you don’t do that anymore.

    I went with food, because many in Western societies can understand and because this assumes no ill intentions, no villains. But you can probably also do something similar relating it to the sleep dep one gets used to at certain points in life or the way some of us adjust to abusive situations. You just don’t know, or you forget, that what you’re living and feeling isn’t actually the way it has to be, isn’t “normal.”

    When I got my diagnosis, I went and I did some research. I stopped looking at what life was like for allistic people, what the neurotypical experience was, stopped trying to forces myself to be or to at least appear like that. I started reading about what this differently wired brain of mine might mean, what sort of experiences might be typical for the neurodivergent. I started to learn that typical people didn’t feel and react like I did in many situations, but that I was also well within typical for someone on the spectrum. I’m Autistic, so I have a different “appetite” than you do. And that’s okay.

    side-by-side image of what is normally served us (whole burger and chips) vs actual healthy portion size (half burger and half as much chips)

    I started to try to only “feed” myself what my brain and body could handle. And the change has been great. Far fewer meltdowns. Far fewer instances of sensory overload. Less discomfort. Less misery. And, at least for me, the things my Autistic brain excels at are now, uh, more excel-y.

    Some people might be thinking, “But you didn’t ever complain before.”

    You’re right; I didn’t. Why should I when I assumed we were both pushing through these same things? Why should I when, the few times I ventured to tell people how I was feeling, I was mocked or treated unkindly? (Not by you, maybe, but also I maybe didn’t tell you because I’d been sufficiently shamed into silence, into assuming I was just broken, before I even met you.)

    I also generally hesitate to mention this sort of thing because some of you find it hard not to take my changes personally. Or, if I don’t mention them in a broad and public way like this, you might wonder if I’m only saying this is broadly applicable to spare your feelings.

    The fact is:

    • I have sensory processing issues. Noises and sights (including lighting) that are totally nothing to you can quickly flip my brain into overload. Touch is another big one, and that includes things like temperature. (I’ve also got some taste sensitivities, but I’m usually not licking you…). I think smell might be the one sense where I’m close to typical…
    • I have some innate anxiety that also complicates anything to do with human interaction. I’m not shy or scared of interaction (which is a thing often cited against me when people don’t believe I’m an introvert); it’s more that my brain’s survival instincts involve a strong aversion to doing anything incorrectly or imperfectly lest I die or be cast out of the protection of the tribe. (I’ve never managed to convince my brain that there are no longer sabre-toothed tigers in the shadows.)
      Screencap from Skyrim of a woman fighting a sabre-toothed tiger
    • If I don’t get hours of solitude a day (sleep and, when applicable, time spent doing a day job don’t suffice), my brain starts to spool up and break down. I suspect, at the very least, that’s because the solitude is a break from sensory and anxiety issues.

    So, yes, I used to “over eat,” metaphorically speaking, ignoring the many consequences that came from not honouring the things in those bullet points, and so I used to live with a higher level of constant discomfort. And, sure, the food was sometimes so good. But I’m now living a life that keeps me as close as I can manage to “eating proper portions” for me. Or trying to. There are some things that still keep me a little over-fed that I can’t seem to shake yet. And there are some times I choose to over-eat a little because I just love you or an experience enough that I justify a little misery, as an exception, just this once.

    I know that my family and my true friends (and probably hosts of well-intentioned strangers) wouldn’t want to make me miserable. I also know that most, if not all, of them are trying hard to be understanding of the changes. (Thank you!!) And that there have been some things going on the last year or so that have made it so I couldn’t even, if you will, eat as much of them as I’d like and could safely do.

    I hope this helps you understand me (or others in your life) a little better and maybe feel a little less hurt, frustration, etc as we stop doing things we used to do in pursuit of good health.

    Yes, I used to, but I don’t anymore.


  • Autistic (2 Year Update)

    If you haven’t already, please read the introduction post. That will give you context for this page.


    Note: This wasn’t on the original list, but it seemed like a necessary update to the topic.

    As of today, it’s now 2 years since I was diagnosed as being autistic. I’ve been meaning to write an updated post for my Not Ashamed series, but I’ve been so busy. And, even today, I should be writing things for my upcoming blog tour, so this will be shorter and less detailed than it could have been.

    I wanted to write because I’ve learnt a lot since my diagnosis and because I no longer want to hold back on details of the reality of my own autistic experience and challenges. Frankly, if you don’t want to know me or work with me because of that, then it’s just best for us all if you don’t. (Not that I have time to enumerate my particular autistic traits right now…)

    I’ve learnt a lot about autism in general, about ableism (because, with the current structure and expectations of society, autism is a disability), about the difference of being a woman or girl on the spectrum instead of a boy or man.

    A lot about myself and what it means to be me and be autistic. A lot about how it feels to admit that I am disabled in the context of this society in which I live. A lot about how much less disabled I am online.

    I’ve read so much, trying to keep up as the new studies roll in and as the neurodiversity movement helps frame better ways of talking and thinking about autism and other forms of neurodiversity.

    I’ve been infantalised by people who should know better once they learn I’m autistic. I’ve tried to process the best ways to respond to people’s unintentionally rude, ableist, and hurtful behaviours and comments. How to gracefully educate (or encourage them to find other autistic voices with which to educate themselves) parents and other neurotypical people who have reasons to have opinions about how to help (often “help”) and care about someone on the spectrum.

    I’ve had opportunities to explore and try to snuff out my own internalised ableism. As with any time spent processing one’s prejudices, it has been uncomfortable but important and, ultimately, rewarding.

    I’ve posted a bajillion articles about autism on a couple of my social media accounts, resulting in some annoyed people and some appreciative people. I’m trying to help people who care about me understand my reality and to spread the new knowledge I have. But I’m also coming to have one more realm in which I understand that it is not the job of the minority to educate everyone, especially when people have access to the same resources I do.

    It’s been an intense and enlightening couple years. I’ve had great experiences and horrible ones. I have no doubt there’s still more for me to learn and still more “opportunities” ahead for me to try to not end up hitting anyone for insensitive or uninformed comments.

    So, before I get back to writing about my book, here are some quick thoughts and statements.

    I still regularly discover ways in which my autism has shaped me and my experiences, and I appreciate the friends and family who have believed me when I have said who I am and what I need. We should do that for people in general, non?

    I love how much nicer it feels to be me now that I recognise and honour the ways that I need to function and structure my life. I have, for so long, thought that everyone else felt and experienced life very much like I do and that I was just being weak to let it bother me so.

    That said, there are things that are important to me, that I’m choosing not to give up, that are difficult. That, having discovered how non-difficult some things can be now that I know how to better care for myself (or what to cut out), I am acutely aware of the difficulty of. I do what I can to mitigate the discomfort and I have very little, if any, patience for people who criticise or prevent those efforts.

    Autism Speaks is a pretty problematic organisation. If you truly care about someone autistic, including yourself, please don’t listen to them. Please find places like the ASAN or Autism Women’s Network to start or continue/improve your learning. (And if you want to know why adult autistic people have been saying Autism Speaks is terrible, this is a great opportunity for you to take your education into your own hands and google that.)

    Here’s a handy post someone made about how to understand what it means when we talk about autism being a spectrum.

    You might also want to consider how that better understanding of a spectrum informs the reason that many of us eschew “high function” and “low function” labels. (Hint: You can be highly functional in one way but not in another, and get labelled based on which trait a person or society puts more emphasis on. And because people will use that label to determine your overall capability and, sadly, your worth, that’s a pretty crap approach.)

    If you’ve met one autistic person, you’ve met…one autistic person. There are so many ways we can differ from each other that you can’t just assume your past experiences have totally prepared you for me. (But, really, that’s always been true when it comes to me. Ha!)

    Anyway, I need to get back to writing things about my book, and the two links I gave you are great starting points if you want to better understand autism from an informed perspective that involves autistic people in the conversation. (A lot of my best learning has come from things posted by the Autism Women’s Network.)

    Two years from now, I should be back with some kind of militant autism manifesto. Woohoo!

    I am not ashamed to be autistic. In fact, if given the opportunity to not be autistic, I wouldn’t take it.

    xx

    Cross-posted to the Not Ashamed section of my site (so that it’s all tidy).


  • Not Ashamed: Autistic

    If you haven’t already, please read the introduction post. That will give you context for this page.


    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.

    The spider I have to get past is bigger than yours...

     

    The cut on my arm is bigger than yours...

    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.

    Cross-posted to the Not Ashamed section of my site (so that it’s all tidy).