From Overload to Anger

Sometimes overload — whether sensory overload, social overload, or general emotional overload — feels like exhaustion. It feels like muddy thoughts, dull senses, and an overwhelming desire to escape. That’s often what it feels like, at least for me. But sometimes what overload feels like…is anger.

Let me back up. For most of my life, I didn’t know I was autistic, so I didn’t realize that I was extra sensitive to many sensory inputs. Sure, I could tell when sensory issues were bothering me, but in general I assumed that if they were bothering me, they would be bothering anyone. The situation alone was the cause, not the situation plus my (autistic) sensitivities.

What this means is that I assumed that other people would know they were creating an offensive sensory environment, and they just didn’t care. I assumed my assessment was an objective truth: it simply was too loud. Too bright. Too smelly. Too chaotic. Too upsetting. All the other people involved? They should have known this was too much.

And I would get so angry that they didn’t. Angry that I had to say something, to call attention to myself and the difficulty I was having. Angry that they didn’t just know. Because it should have been obvious…right?

But my assessment is always my assessment: the combination of me and the specific situation. Yes, some things would be too loud/bright/scratchy/crowded for almost anyone, and yes, sometimes people are inconsiderate. But often I would end up getting angry about something no one else even realized was a problem. It might be the annoying, distracting buzzing sound that no one was fixing because no one else heard it. Or the loud background music that kept me from understanding what someone was saying…because of my own auditory processing issues, not the music’s volume.

So I try to catch myself now when I start feeling this way, and ask myself whether the problem really is as self-evident as it feels to me, or if it’s partly my own idiosyncratic (and autistic) response to things. Of course, if it is the latter, I can still ask for the situation to be changed — and now I can ask in a way that acknowledges that other people may not have realized the problem, rather than angrily assuming they didn’t care.

And none of this is to imply any self-blame on my part; there’s nothing wrong with having sensory sensitivities and needing to take steps to be more comfortable. But being aware of those sensitivities, and how they contribute to my perception of a situation, can help me not only head off feelings of overload, but also recognize and own that perception before overload flashes into anger.

Delayed Perception

As I’ve been learning more and more about autism since my diagnosis, I’ve come to recognize how different autistic traits manifest for me. (For a recent example, see my last post about black-and-white thinking.) It’s been an interesting process of translating descriptions of autistic traits and/or diagnostic criteria (which can be fairly abstract) into real-life examples — and it’s a process that would not be possible without the many first-person accounts by other autistic people in books, blogs, articles, and tweets. You’ve all helped me understand what a particular trait might “look like” in different autistic people, and so what it might look like in me.

What I’ve been noticing, though, is that while I can read about autistic tendencies and think, “Yes, I experience that,” it’s often hard to notice in the moment that I am experiencing them. Now, I think I’m a pretty observant, self-aware person — but things like sensory overload, or brain fog after stress, can still be affecting me without my conscious awareness. In a way, it’s just part of the nature of the beast — exhaustion after social activities makes any kind of thought more difficult, for example. Sensory overload from external sources makes it hard to notice my internal state. Eventually I notice that I’m feeling fried, but only after it reaches a tipping point. Up until then, I don’t feel myself getting fried.

And then there’s delayed processing. Delayed processing can give me an emotional reaction to something that happened long enough ago that it’s not part of my conscious memory anymore. That makes it hard to realize just why I’m getting emotional. Add to that a degree of alexithymia, so that I don’t necessarily even know what I’m feeling, and things can get very confusing, indeed. So I end up with delayed processing, and also delayed recognition that I am even still processing something.

No wonder meltdowns and shutdowns can seem to come out of nowhere!

So I try to pay attention to my internal state, and also build up greater recognition of the types of situations that are likely to trigger these difficulties. But I’m also trying to learn how some of those intermediate stages feel, like the point where I’m getting socially fried but am not quite there yet. I’m hoping that will help me head off those kinds of problems earlier, and just generally pace myself better when I’m out in the world.

Black and White Thinking

When I first read that autistic people tend toward rigid, black-and-white thinking, I thought a lot of it didn’t apply to me. When it comes to ideas and concepts, I feel I am very open-minded and flexible. Sometimes I think I see multiple sides too easily, and have a hard time staying firm in my convictions. I even find it easy to hold beliefs that others may find conflicting, such as the value I place on reason and scientific knowledge and the value I also place on emotion and spiritual or even mystical experience.

But what I am coming to realize is that my either-or, all-or-nothing thinking often comes into play around people. I am usually very easy-going when I meet people, looking primarily at the things we have in common — and usually there is something, since I typically meet people who are friends of friends, or who are at an event with me that indicates a shared interest between us. I assume that if we have some things in common, we likely have many others. But then if I find one of those people expressing views that I strongly disagree with, even in an unrelated area, it throws into question all of the value I have gotten from their other statements.

Similarly, there have been people in my life with whom I was once close, but whose behavior led to a break in our relationship. I find it very difficult to value the memories of those friendships, and in cases where the person was also in a teaching or mentorship role, I find it extremely difficult to value the things I learned from them. It can take me a long time to circle back around to an appreciation of the ideas or skills they brought into my life, and to not associate those things only with the difficulties that came later.

I don’t particularly want to be this way. I’ve spent most of my life feeling like I am that person who expresses the “wrong” belief and suddenly everyone turns on me; I don’t want to do that to others. At the same time, though, because I can be so open-minded about ideas, I try to be careful about the people I allow to influence me. And the fact is, I have never in my life agreed with anyone 100%. At this point I know that’s not going to happen, so I go in with the (at least theoretical) mindset of “take what works for you, and leave the rest.” So I think I do tolerate a great deal of disagreement with other people — it just has a limit. It’s kind of like my ability to tolerate uncomfortable situations: I can do it for a certain amount of time, but then I’m going to speak up and/or make some changes. So there is a threshold beyond which I will be tempted to disengage entirely with everything about a person, and often that’s not really fair.

Mind you, sometimes it is fair; I’m all for dropping any engagement with someone or someone’s work after discovering that they espouse some horrific ideology. I’m talking more about reaching a point where I disagree — strongly but not necessarily vehemently — with someone’s perspective on one thing, and so lose respect for things they’ve said or done in other areas. It becomes all-or-nothing, black-and-white thinking that erases all the nuanced opinions that I usually carry through life.

(I also struggle to find middle ground between doing something “perfectly” and feeling like an utter failure — but that is a topic for another post!)

Too Many Voices

If you’re like me, you probably know how it feels to get overwhelmed when too many people are talking at once. Maybe it’s a relaxed group conversation, or an animated classroom discussion. Maybe you’re trying to have a conversation in a crowded restaurant. But whether or not the majority of voices are directed at you, just the sheer volume — both the volume of noise and the volume of words/thoughts/ideas — begins to overwhelm any single voice, any single unit of information being conveyed.

Sometimes the internet feels like that to me. Especially when it comes to social media, and particularly when it comes to Twitter: whether people are directing their words toward me or not, there are just too many voices for me to process.

And when that happens, I lose my own voice.

I lose my voice because I have to pull back. Otherwise I get lost in the forest of other people’s words, and that makes me lose track of what’s important in my life. Sometimes I really want to reach out, but I can’t figure out what to say. I don’t always want extensive interaction, or help solving a problem — I just want some connection. But then I pause, because I don’t want all the voices focused on me, even though I dread being ignored as well.

So all of this is to say that I have been pulled back lately. Right now I am starting to reconnect with Twitter after nearly a week off, but I am still not feeling ready to share very much. I am woefully behind on reading all of the wonderful blogs I follow, too, and the thought of trying to catch up is daunting. I will be visiting family this weekend, which has its own trials, and we’ll see how “peopled out” I feel after that.

I do want to say, though, that generally things have been going well. 🙂 In fact, that’s probably part of why I’ve needed to pull back from online interaction — there has been a lot going on, and my focus has been pulled into new projects and areas of study. But I’d like to find a balance that allows me to maintain the connections I’ve made in the online world while also not getting overwhelmed by the flood of voices.

April and Accuracy

I think one reason April (at least in its guise as Autism Awareness Month) is so stressful and aggravating for autistic people is the sheer amount of mis-/disinformation bandied about: since many of us like things to be correct, we feel the need to correct it. This often leads to friction, because, well, people don’t like to be corrected, even politely. Beyond that, I think there is often a mismatch in the intent of communication when it occurs between autistics and allistics.

I realize I’m generalizing here, but this is a fairly common trait; I think it’s one reason why autistic people are often said to “take things literally.” (But we could just as easily call it an allistic failure to say what they mean and/or mean what they say.) When someone says something, autistics tend to see it as an informational statement, and evaluate it as such. But for an allistic person, the main point of the statement might have been something entirely different — sharing something that was (unknowingly) inaccurate about autism, for example, might have been meant primarily as a social signal that the person cares about autistic people, not specifically as a sharing of facts. A lot of communication is meant this way: social sharing that signals virtue, for example, or reinforces the speaker’s place in a particular group.

Evaluating and correcting these statements on their factual content, then, tends to put the other person on the defensive — what they hear is a rejection of their social declaration, rather than a more neutral offering of more accurate information. Then we might get defensive, because we were just trying to help, but the other person reacted in a very negative fashion. And then we end up in a widening spiral of miscommunication that is very hard to get out of, because neither person realizes they are not having the same conversation at all.

As an aside, I think this is also what lies behind the phenomenon of person A getting upset about something they believe is true, but only getting more upset when person B tells them that it isn’t. On the surface this is confusing, because if they were really upset about that thing, wouldn’t they be relieved to find out it wasn’t true? But they’re not. I see this all the time, particularly when it comes to people sharing information of…shall we say…questionable origin. Sharing that “news” is often less a matter of informing others and more a case of declaring one’s allegiance, and challenging its accuracy is seen as questioning that self-identity. Plus, again, people generally don’t like to be corrected, even when your intention is to help them feel better by pointing out that the thing upsetting them isn’t really real.

Anyway. I’ve come to realize that this mismatch is actually one of the primary causes of miscommunication in my life. I will focus on a factual detail in someone’s statement, and respond to that, when that wasn’t the point of the statement for the other person. I am slowly starting to be able to notice this before I respond in a factual manner, but at least I’m usually able to recognize it now once a conversation has started to go off the rails. 🙂

P.S. Some of us also tend to take statements literally in the sense that we don’t “get” sarcasm or metaphor, but this is another way that it manifests, and it is the primary one for me. I think this is also related to the “social (or pragmatic) use of language” that is said to be difficult for autistic people (but which, again, could also be characterized by an allistic insistence on unnecessary communication).

Autism Appreciation

Ah, yes. Autism Awareness Month.

Once more, we meet again.

(Ok, it really starts tomorrow, but I’m already looking over the horizon in weary resignation.)

Last April was my first time writing about this phenomenon, as it was my first time experiencing it…well, no, not my first time as an autistic person, because I’d been that all along. But it was my first time knowing that I was autistic, knowing that I was one of the people the world was allegedly being made aware of.

Did all that awareness work? It hadn’t up to that point; as I wrote last year, all of the previous “awareness” months hadn’t made me aware that I was autistic, so clearly the type of “awareness” being spread was not so helpful in that regard. From the generally baffled and surprised reaction I’ve gotten from people as I’ve started to tell them I was autistic, it hasn’t helped them become more aware, either. And my continued exposure to mainstream impressions of autism hasn’t convinced me that awareness is growing on a larger scale, either.

So I’m with those who say we don’t need any more of that type of awareness. But we do still need more real awareness — the kind of awareness that comes when we listen to what autistic people have to say about autism. We need the kind of awareness that counters the fear-mongering approach of groups like Autism Speaks, the kind of awareness that would help people like me realize we’re on the spectrum, and help the people around us to understand how we see the world.

I am also with those who say that beyond Autism Awareness, we need Autism Acceptance. It isn’t enough to be “aware” of autism if that awareness leads you to rail against it and treat it as a great burden on society that needs to be cured. Although I would hope that true awareness would not lead in this direction, acceptance is still another step beyond awareness. As Shannon Des Roches Rosa has written, “Awareness is passive. Acceptance is a choice.”

So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.

Because just as we need more than awareness, we need more than acceptance. Acceptance can manifest in very positive ways, but it can also manifest in ways that involve one group “putting up with” another group as an act of charity. “I accept your many flaws and love you anyway” is sometimes the vibe I get from that sort of thing. (Not always, but often enough to raise my hackles.) Appreciation, though, requires recognition of our strengths as well as our struggles, of our gifts as well as our “deficits.”

Can we as a society come to appreciate the benefits bestowed by our sensitive autistic senses, our iconoclastic honesty, our deep love of our interests? Can we celebrate the physical and emotional expression embodied in spinning, bouncing, flapping, or rocking? Instead of grudgingly making accommodations, can we learn that making workplaces and public environments more comfortable for autistics makes them more comfortable for everyone, and actually thank autistics for pointing out the problems?

That’s what we really need: a true celebration of our differences, and recognition of how those differences can be a positive force in the world. But I think that’s going to take a little more than one month to achieve.

Taking Steps

So. I have been Taking Steps.

(When I put it in caps like that, I feel like a Terry Pratchett character — which isn’t a bad way to live a life, frankly.)

I mentioned last month that I was considering going back to school, in a totally different field compared to my bachelor’s degree, but I didn’t explain what that new field was going to be. That was partly because I was still weighing some options, but also because I was still mulling over this whole course of action, thinking about what it would be like. But as I said above, I have been Taking Steps. I have enrolled at my local community college. I have transferred credits from my bachelor’s degree. I have taken placement tests in math and English. I am getting ready to select (and meet with) an advisor. I have picked out classes for the fall (and am getting really excited about them). So I guess I’m doing this.

But what am I doing, you may ask? I am getting ready to start studying in the field of human services, with an eye toward working — in some capacity — with other autistic people in a supportive role. That may eventually lead to a master’s in social work and clinical certification, or it may lead in some other direction; I’m not sure yet. All I know is that something needs to change in the way that autism is seen by those in the helping professions, and I want to be part of that change.

I want to help older adults learn to make sense of a late-life diagnosis. I want to help younger adults transition into independent living. I want to help autistic children and their parents understand that children on the spectrum learn and grow, and they can do so in ways that honor their differences instead of erasing them. And I want to help educate teachers, doctors, therapists, and other professionals to understand what autistic people need…and what we don’t.

Now, I am also Taking Steps toward doing what I can without a formal education in the field, but the education piece feels very important to me. It’s not just about getting a piece of paper that other people will respect, but about learning more about how to be a good source of support. A combination of study and practice seems a good way to do that.

That, and reading more Terry Pratchett, of course.

Baggage

I’ve been getting a few glimpses lately of emotional issues that are resurfacing long after I thought I had dealt with them. This has led to some interesting thoughts (well, interesting to me; you can be your own judge after you read them).

Because I often don’t know what I’m feeling — at least not right away — I also don’t know how much emotional baggage is piling up from the events I experience. This has two parts to it, really: 1) it can take me a long time to realize how much of an impact something has had on me, and 2) even when I realize that, I forget that the event was having that impact the whole time I didn’t know about it. What I’m realizing now is that #2 is an even bigger factor than #1 when it comes to my long-term mental and emotional health.

Of course, #1 has layers to it as well. Even when I do recognize an immediate impact, for example, I don’t always realize the full extent of it until much later. For example, I got divorced from my first husband many years ago. This was obviously an emotional event, and I got emotional about it — but it took me many years to realize just how deeply it had affected me, especially when it came to my sense of self and my worthiness to be loved. I absorbed a deep sense of “not okayness” from that event, which has taken a long time to come to the surface.

Other things in my life have had similar delayed impact, sometimes decades delayed. But the thing that I realized with #2 is that delayed impacts aren’t really delayed; it would be more accurate to say they’re unconscious and therefore invisible. So I wonder if one reason things get harder for autistics as we get older — often leading to burnout — is that we accumulate more and more baggage we don’t know how to process. In fact, it’s baggage we may not even know that we’re still carrying, so we don’t know that it even needs to be processed. Of course it piles up.

Night Driving

Blazing,
Too intense;
Eyes are headlights in the dark.
Just one pair brings pain,
And too long a stare
Erases thought,
Takes the whole world
Out of my sight.

It takes time to bring it back,
To realize where I am
After the glare has passed.
And once the first has caught me,
It does not take many more
To disorient,
To dazzle,
To plunge me into danger.

What saves me then
Is silence,
And lessons learned
From night driving:
I drop my gaze,
Searching the ground
For the painted white line
That will lead me home.

Conferences And All They Entail

Yesterday, I attended the AANE (Asperger/Autism Network) 2017 Spring Conference, which was titled Hiding in Plain Sight: Shining Light on Women with Asperger/Autism Profiles. It seemed primarily geared toward professionals working with people on the autism spectrum, but two of the keynote speakers were autistic women, and there were quite a few of us in the audience as well.

VoxVisual wrote up an excellent recap at her blog already, which is great, because I am still too wiped out to be that organized. <grin> And honestly, I don’t know that I would have too much to add when it comes to describing the speakers, the venue, and the overall experience. So go read her summary, if you want to get an idea of what the conference was about.

(And yay, we got to meet! 🙂 That was really cool, even if we had to postpone dinner plans due to exhaustion.)

But while I don’t want to duplicate her efforts in recapping the conference, I do want to write about my subjective experience of planning for, getting to, and physically attending it. First of all, I was selected to read an essay I had submitted, as one of six personal accounts of being a woman on the autism spectrum. (You can read that essay here, if you like.) So even before conference day, I was interacting with the organizers to polish up my essay and make sure I was ready to present it. The volunteers I emailed and talked with were very good about setting expectations and answering all of my questions — clearly they (as women on the spectrum themselves) were aware of some of the anxieties that might arise.

The week before the conference day, I made sure to print out all of the information I would need — directions, schedule, a clean copy of my essay to read — and make a checklist of other things I would need to bring. I wanted to bring plenty of water, for example, and I would be bringing my own lunch. Lunch was included in the conference registration, but having recently cut wheat out of my diet, I was concerned about the gluten content of the sandwiches offered. Besides, I figured the day would be stressful enough without subjecting my body to unfamiliar food (which doesn’t always agree with me).

Google Maps told me the drive would be about two hours each way, but I would be driving in toward Boston (and back out again) around rush hour, so I gave myself extra time. It ended up taking me about 2 1/2 hours each direction; I left home around 6 am and got to the conference center (after parking and making my way through several wings of the hospital building) a little after 8:30. The first speaker didn’t start until 9, so that was perfect.

Check-in was easy, but walking into a large crowd of people outside the venue was disorienting. And it wasn’t just the people: there were tables with food and coffee, other tables with pamphlets and fliers for the organizations who put together the conference, and too many other things to look at. So I went in to find my seat; at least I knew I was supposed to sit down in the front, and when I got there someone recognized my name tag and directed me to a seat.

Since I was early, though, I stood back up to see if I could find Vox. We had told each other what we would be wearing, and shown each other pictures, so this turned out to be easy. 🙂 I felt like we immediately clicked, and spent the rest of the time before 9 chatting about several different things. (As would come up later at lunch, with some other women, socializing with other Aspies/autistics can be soooo much easier!)

I went back to my seat just before 9, where I met a couple of the organizers and some of the other speakers. I felt a little exposed sitting in the front row, right in front of the podium where most of the speakers would be standing (and therefore where the camera for the live-stream would be pointed). This didn’t become evident until the second speaker, though, because the first was himself being live-streamed from the UK. Being in the front row also meant I was looking up most of the time in order to see the slides, or up at a different angle to look at the speakers’ faces. The venue was fairly bright, too, and sometimes the sound was too loud, while other times it was too quiet.

By the noon lunch break, I had finished all of my water (I was very warm for most of the day, as well) and was developing a low-level tension headache. My neck and shoulders were tight, something that had crept up on me without my really noticing it. I think it was all of the ambient noise from the crowd — people turning pages as they followed along with the speakers in their printed slide packets, occasional whispered conversations, people moving around. These are the same sorts of things that had stressed me out while working in an open-plan office, things I didn’t even consciously notice until I learned I was autistic and tried wearing noise-canceling headphones. I guess I still don’t notice them until they’ve built up into tension and pain.

(As an aside, it was interesting to read Vox’s observations of the reactions from the audience, and what things seemed to surprise or interest — or upset — them. Since I was in the front row, I didn’t get a perspective on that.)

Lunch conversation was great, and it was good to get some food. (I also snagged some more water.) It probably wasn’t the best idea when I suggested we seek out a table in the larger hospital cafeteria to eat — it was busy, and sometimes hard to hear each other over the dull roar — but it wasn’t clear where else we could have settled down to eat. The rooms near the conference venue were already pretty full by the time we all got our food.

Settling back down for the afternoon, I was already pretty fried. As I mentioned earlier, I was really warm during most of the day. It was a very cold day, but I thought I had dressed in a way that struck a balance between keeping warm outside and not being too bundled up inside. Apparently I should have worn something a little lighter. It also didn’t help that I was scheduled to present my essay in the mid-afternoon, so I had most of the day to be nervous in anticipation of that. My nerves weren’t too bad in the morning, but during Liane Holliday Willey’s talk after lunch, it was all I could think about.

I also felt like my voice was going to be hoarse from all the talking over lunch and during breaks — but I didn’t want to drink too much water before I had to talk, because I hate the feeling of having to pee while trying to focus on something else. So I decided it was probably for the best for my mouth to be a little dry; it would probably help my voice sound a little clearer than if I had too much moisture.

(Seriously, these are the logistical practicalities that run through my head all the time. All. The. Time.)

In the end, I was very happy with the way my presentation went. My knees were shaking, but my voice wasn’t, and I had a podium on which to steady my hands. After I was done, I was very happy to be sitting in the front row, because I only had a few steps to walk before I was back at my seat and out of the public eye. And I definitely felt my shoulders relax — though not completely — when it was over.

Maybe because of that feeling of finally-now-I-can-relax, I kind of floated through the last talk of the day. It also was a bit less relevant for me, as it related more to parenthood, but I did enjoy some aspects of it. Mostly I was just getting hit by the cumulative weight of all of the sensory input of the venue, the social interactions during lunch and breaks, and the cognitive processing of listening to all of the talks, as well as all of the logistical planning required to navigate through the day. I managed to have a few more — really excellent, I have to say — interactions after the event was over, but yeah, I was very much done.

My brain was foggy with all of that by the time I left, and I still had a 2 1/2 hour drive home — over half of it in the dark. At least in this direction I was leaving the city traffic behind, and most of the night driving was on familiar terrain. I had listened to an audiobook on the way in, but by evening I was talked out and needed music. So I put all of my Dar Williams albums on shuffle and sang along with her for the whole way home. 🙂

Overall, this was a great day, and I enjoyed the conference immensely. While I think there may have been some ways in which the venue might have been improved as far as sensory issues — Vox mentioned several in her post — I also feel like a lot of the things that eventually wore me out were just…going to wear me out. I also think I might have been better off sitting somewhere in the back for the morning, and only down in front during the talk right before my presentation. I would have felt a bit less “on display” and also would have been farther away from the epicenter of all the light and sound.

I feel like there is so much more to say — for example, I really, really enjoyed listening to the keynote speakers and the other first-person accounts, and think they provided a lot of good information and perspective, especially to those in the audience who weren’t on the spectrum. But I wanted to write this up as an example of how…involved it can be to attend something like this as an autistic person. And now I’m going to enjoy a nice quiet weekend to unwind, because I can. 🙂