Asperger's / Autism Toolbox
Alert!A Post by Monkey Pliers
on May 17, 2014
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Well, it happened.
A couple of days ago, while I was away from home, attending to various commitments and plans, I had a partial shutdown in a store. Right now, in this post, I won't get into all the things that have been stressing me lately, especially this week, and most especially on that day. Suffice it to say I'd been having a tough day, and I was hitting my limit. All it took was one more thing. And that tiny, little thing was that, after having struggled to find the item I was looking to buy, and while feeling a sense of the limits of my time, I went to the checkout area and discovered that, of the two or three lanes open - I can't remember exactly how many and am now not sure I was able to register the number correctly in the first place - each one was backed up with people whose carts were loaded up with what seemed to be an astounding heap of items. I paced back and forth a few times, restrained myself from giving in to the sudden urge to throw my single package on the floor or at a set of shelves, and finally walked a few steps away to sit down on the floor near a pillar, where I then proceeded to clutch my head and hair while also attempting to use my arms to block out the heavy encroachment of the world.
I could sense people walking past me, as though they were small groups of elephants. It's not that they shook the floor or were so terribly loud; it's just that I could feel their presence so acutely, as though the wake they left in the air was pushing against me like large ripples of water. I have no idea how long I sat there. The time seemed to pass both quickly (because the gap between sitting down and being approached evaporated as soon as someone started making contact with me) and slowly (because it seemed as though so many people walked by while I felt myself locked in place there. During that time, I managed to get my microfiber dusting cloth out of my pocket, which meant I had a comfort item to hold and rub against the skin of my hands and face, helping to soothe me somewhat. (I'm very glad I've made a habit of carrying that cloth. It's been useful to me on several occasions when I haven't been able to have, or haven't felt comfortable carrying, anything else.)
Eventually, I heard a woman's voice asking me if I was all right. I couldn't say anything but, "Wait... wait..." while I fished in my pocket for my ID case without looking up. By the time I had it out and held it up, I realized she must have walked away, because nothing seemed to happen. Nobody spoke, so I didn't know what was going on. This became a new source of anxiety. I had no idea what was going to happen to me. Would I be left alone? Would someone come and try to throw me out? Would there be some major reaction, such as the calling of the police or an ambulance? My mind was tangled in the possibilities, as I continued to struggle with the mental mess created by the events that had led up to this scenario. At least no one was bothering me much yet, so there was a kind of calm in my curled semi-solitude competing with the increasing wind up of my emotions over the uncertainty I was facing.
I managed to glance up for a moment, and I saw a woman several yards away, apparently speaking on a cell phone. Scary. Was it the same one who had spoken to me? Who was she calling? I simply put my head back down. Then I heard a man saying, "Hey, buddy, are you okay?" Recognizing that I'd thrust it into the air closed the first time, I opened and held up my ID case and, for the first time, was able to show my Autism Alert Card in a moment of inability to communicate effectively in any other way. I'm usually highly verbal, so I'd previously only used it when going to medical facilities for various procedures, because it made it easier to get across why I needed help with things such as filling out forms or why I might react to some things in a way other than what most people might usually expect. That made this my first time using it under circumstances such as these. (Note to self: If you hold up your ID case without opening it, people might think you're trying to ...what? Give in to a perceived attempt on their part to mug you? Uh...)
Next thing I knew, the same man I'd just heard was asking someone, "What's wrong with this guy?" Then another man was answering, "She's Autistic. So's my son." The second man's voice felt closer as he repeated, "So's my son." I felt a sense of relief. He seemed to be directing the repetition of his statement towards me, so I thought, Here's somebody who knows what's going on. He put his hand on my wrist twice during the course of his interaction with me, but he did it in a way that didn't freak me out. Had I been less able to register meaning in that moment, I'm not sure what I would've made of it, given that being touched is something I'm usually just kind of funny about with most people (rather than finding it outright physically painful). In any case, his touch was somewhat brief and firm, and it didn't much startle me. Instead, it was kind of grounding, pulling me back into the realm of communication. There was a distinct, but not sudden, on and off to it that somehow made it something I could handle. I'd never encountered contact quite like it before.
This man asked me what I needed. I didn't really want to keep sitting there. The floor was hard, and people kept passing by. I knew I could be alone and reasonably comfortable in my truck while I recovered, so I just wanted to make my purchase as quickly as possible and get out of there. Not being able to complete my mission would've created additional stress, so I really felt I had to see it through. Otherwise, I could simply have left in the first place. It was being locked so tightly between my need to buy this item and my need to get away that was causing my inability to cope.
I wanted to convey the powerful sense of urgency I felt about carrying out my task unimpeded, but I stammered: "I need... I need..." He told me to take my time. He offered me water, an offer which I either declined or didn't respond to. I'm not sure. Aside from bits like this, though, I think I remember most of what happened so clearly not just because I was only partially shut down, which is what's most common for me, I think, but because he was someone nonthreatening to focus on, and I was beginning to respond by coming out of my garbled and overloaded state somewhat. I finally managed to tell him, "I need to get through the line as quickly as possible," and he then made that happen. I'm guessing he must've been the manager. As I attempted to rise, he told me to take his hand, and I did. He pulled me up and directed me to a checkout lane. By then, all of them were empty. Had I waited in the first place... but there was no way for me to know it would clear out so completely, and I really have no idea how long it took anyway.
On the way, I managed to express thanks for the help I was receiving, though I wasn't able to address myself to anyone in particular just then. The guy at the checkout was told to move me right through. Not that he wouldn't have, with no other customers by then, but hearing this made me feel reassured. I knew what was going on and could expect to be away from there shortly. The cashier was patient and kind as he asked for my membership card, which I'd forgotten to have ready. In seconds, the transaction was complete. On my way out, the manager asked if there was anything else I needed and offered me water once more. I was able to say I had some water in my vehicle and would be able to take time to collect myself further there. That was pretty much it, and out I went. I barely saw the faces of most of the people involved and can't recall having looked at all at the first of the men who spoke to me, before the one who gave me the most help.
Before my diagnosis, I would've had no clue what was happening to me. I might've left the store without making my purchase, but I'd have been a terrible, miserable, confused mess after the fact. As it was, circumstances made things much easier. It was a more public display than I might've liked, but I suffered no serious embarrassment in the end. Instead, I felt understood and got the help I needed to get through. My grasp of my situation (diagnosis, generally and shutdown, specifically), my possession of an alert card that informed others as to what was transpiring, and the presence of an appropriately enlightened and experienced individual all converged to allow me to come away from the incident able to calm myself enough to eventually make the drive home safely.
Later on, I was surprised by how quickly and completely I seemed to recover. But I realized how much of my energy had been sapped by that moment, not to mention by all the things leading up to it, when I saw how early I ran completely out of energy that evening and how late I had to sleep the next morning. In fact, I spent the end of my evening reading a magazine and then found myself unable to get up off the couch on my own to go to bed. My girlfriend had to help me up when she was ready to turn in, some time later. The morning that followed was kind of a fog of occasional waking, thinking I might like to get up, and then feeling dragged heavily back down into sleep again. But I was okay by the time I was finally ready to rise, and the rest of the day proceeded normally (for me, anyway).
I find myself drawing two conclusions from this experience. One is that my Autism Alert Card is a success in such situations, so it's a good thing to have handy. My design works well for me, but there are also many others. I not only offer my own for free download on this Website but links to several other options, as well, so people who are interested in obtaining one may make a choice as to what will best serve them personally. You can find the page for them here.
The other thing is that it's been confirmed for me yet again that progressive parents of Autistics rock! It makes a huge difference to have such a person involved in any situation in which an autism related issue arises. As far as I'm concerned, the gentleman who helped get me through the aforementioned struggle was outstanding, and I'm very grateful he was present in that moment. So, if you're such a parent yourself, and if you're wondering if you really make a difference, the answer is yes. You most assuredly do. And thank you. Those not sure how to handle the sorts of things autism can involve take note: These are your role models. It's not some sort of example of perfection that's required. It's just that a bit of proper understanding mixed with a fair dose of nonjudgmentalism goes a long, long way.
Accommodation and support. That's what I got, right when I needed it. That took me from a state of nonfunctionality to a condition of possessing sufficient capability to complete a task and move on from it. It's all I ask for. I've been able to arrange things so I can mostly take care of myself. But whatever someone's level of ability with whatever aspects of life, the right form and degree of accommodation and support will make a difference, regardless of the functioning label assigned to them by others. The amount and type of help needed may vary, according to the individual and the circumstances, but the level of acceptance needed will be consistently high. We can only be as we are in any given moment, regardless of how we've been in the past and how we'll be in the future. Please relate to us as we are, affording us the dignity inherently deserved by all human beings. When we have what we need, overall and on any specific occasion, we can take care of the rest - whatever that is, and however we may need to go about it. Some of us need lots of help, in very obvious ways, a whole lot of the time. Some of us need more subtle, occasional assistance and a lot of time to work things out for ourselves. We vary a great deal, from one person to the next, and often from one moment to the next. But we're all human beings with something to give and lives to live. Accommodation and support are what allow us to bring that out in ourselves. Accept us as we are, and let us do what we can do.