Narrowly Escaping an Autistic Meltdown in Public

So. The plan for today was simple.

Wake up and get to an appointment at 10 AM.
Then have lunch around noon, then go to work after.

Yeah, that sounds really simple, doesn’t it? Well, it wasn’t.

(Background: the appointment was at the hospital where they have free services to help you pick put a medical insurance plan for Obamacare (I don’t know the actual name of that but I’m sure that’s not it.) I went with my mom last week, but since I had to consult with my husband, we made an appointment for today so we could figure this crazy crap out together.)

We woke up on time, plus-or-minus ten minutes (okay like fifteen minutes late but I hurried and we left on time.). Drove to the hospital, but there was crazy thick fog, construction, and traffic, and craziness, but since my husband, who is a much better driver than I am, was driving, we made it right on time. We parked the car, and went in. The surroundings didn’t look very familiar, but that’s not too unusual, so I figured the information desk people would tell me where I needed to go and once I turned the Magical Corner, everything would be familiar and I would be like “Ohhh I know where I am!” (Yes, that happens often.)

But they were confused, and didn’t know what I was talking about. I told them the name of the person I was meeting with, and they didn’t know anyone by that name. I told them I had made an appointment and they weren’t sure if they even had any appointments made for today. I told them I was here with the lady last week, but I wasn’t sure exactly where her office was. They looked at me like I was an idiot (but well-disguised because they are customer service people) and they called a supervisor and we went through the same thing again, and then the supervisor decided, well, whatever, and took us back so she could handle the mystery appointment herself. Husband and I looked at each other, I shrugged apologetically, he shrugged like, “I have no idea what’s going on,” and we followed her.

We went to a part of the office that was definitely NOT where I was last week, and I was getting more and more anxious and sure that this was wrong. I wanted to talk to the lady I had talked to last week, because she already knew my background and what I was looking for and was really nice and casual and, most importantly, I had met her already and therefore wouldn’t have to go through the stress of meeting a new person. Instead, I followed the new lady. We sat down, and she asked the preliminary questions that the other lady already knew the answers to. She said she would help us sign up online (the other lady said signing up online is a horrible idea, over the phone is much better, and best of all, she did all the talking over the phone!). New Lady handed over a consent form, and by this time I was on the edge of crying.

I was reading the form and was about to poise the pen to sign it when my husband, who clearly understood what the form was for, asked me in a low voice like he was confused, “Hey, what’s this form for again? Here, let me see…” and I handed him the form while looking down and not at anyone, and he somehow miraculously has that NT/husband power to sense when something’s wrong, and as I explained the form to him he asked if maybe we should look it over more. And I said that no, we’re here, we would be late anyways and I don’t know where the other appointment even is, so let’s just do it here. And he saw/sensed my anxiety and we made eye contact and that’s when I broke: I started lowkey crying, trying to hide it from the stranger lady, and Husband rescued me by taking charge and saying that maybe we want to look over our options a little more before we sign up. I took that as my cue to stand up and hide my face and start to walk away. New Lady delayed him with some sort of crap, I have no idea what, while shooting glances at me that I expertly avoided, but eventually we left that office and went outside so I could calm down. I was THIS CLOSE to having a meltdown because I felt like such an idiot because even though I was there less than seven days ago, I had absolutely no fucking clue where the office was.

(Keep in mind, I HATE BEING LATE TO OFFICIAL THINGS. Our appointment had been for 10:00, it was now around 11:15).

I went to the bathroom to calm down and Husband asked Information where the office was and tried to figure stuff out. I came out of the bathroom and no one had any freaking clue what the business card I had even was, let alone WHERE it was. I tried looking it up online with no luck. I gave in and texted my mom, but she didn’t answer. Then we finally found a random website that said kinda-sorta where it was, a little bit. At the same time, the information lady called us back over and said she had gotten through on the phone. She asked where they were and then finally, someone gave her directions to give to us.We were on the South Campus part, and needed to go to the North Campus. You would think the two ends of “campus” would be able to communicate and know where each other are located, but sadly, that’s not the case.  We walked for awhile, got a bit lost, then came upon a janitor who saw we were looking at a map and were lost, and, as I told Husband a few moments later, the person with the  supposedly most unimportant job knows what’s up, no one else has a damn clue but this guy has the answers.

We finally got to a part that looked sort of familiar, and kept following the map. Then we turned the Magical Corner and I knew where we were. We got to the desk and checked in about two and a half hours late for our appointment, then had to wait for forty minutes. Understandable: we were pretty damn late.

During that time, Husband tried to ask me if I was okay, and each time he asked, it hit that switch I have that when I freak out, when,  if someone asks if I’m okay, even though I’m okay by that time, it starts to get to me all over again. So I told him (rudely, I will admit but I was a little stressed out hahah) “How about you stop complaining and we’ll just wait for the appointment?” Or something like that. Then he went and got me some peanuts because we were both starving because we should have been a half-hour into lunch by that point. So then we calmed down and I told him, thank you for putting up with all my bullshit, and we hugged and everything was good.

We finally got called in to the appointment, and that went more or less smoothly. We were in there for about forty more minutes, I actually have no idea how long it was because I had lost the ability to judge time by that point, all I knew is that it was taking forever.

We finally left at about 1:30, and went to the new restaurant we had planned on going to for lunch. However, there was like an hour wait, at least, and he had to leave for work at 2:30. We had forty five minutes to order and eat. So we went across the street and got pizza, which also took forever, and by the time we sat down to eat we had twenty minutes. He  left for work about ten minutes late, but like I said, he drives really fast, so he got to work on time.

I, however, was still on the brink of a meltdown, and decided to return my mom’s missed call from a half hour before. She asked about the plan we picked and I didn’t know the details offhand so I snapped and was pretty rude and almost yelled at her about how shitty a day I’d had, and that I didn’t want to talk about it, and she understood I guess, because she said, okay, well she would call me later, bye. (PS Mom if you’re reading, sorry about that, it wasn’t a good day, as you can tell.) So I tried to breathe and calm down, and then left to go do a few errands which included a lot of driving to places (in CRAZY TRAFFIC) that I hadn’t been to before, and face-to-face business, and retail workers (ugh, the smiles.) Then, after getting lost for a total of around five or more times in one afternoon, I FINALLY got home, and realized I had to go to the grocery store, so I did that and made it out in one piece, and got home and just UGGHHHHHH.

#That autism feel when you get home after a terrible horrible no good very bad day.

Then I also had to make Christmas cookies which was much more complicated than I expected and the ratios were wrong to they look kind of shitty but they work and they are also chocolate, and cookies, and no one will care how they look, because they are delicious. So I’m still very exhausted.

I wasn’t going to bother writing this post but I got a sudden second wind and figured, why not?

So now I will do absolutely nothing until bedtime, where I will go to bed early and sleep later than I should, since I am supposed to go out early-ish, but screw that, whatever, I don’t care.

And that, my NT readers, it just one part of one day in the life of an aspie. And I’m too tired to spend a whole lot of time editing so it describes everything perfectly. So just pretend like it’s even more difficult than it seemed.

And Specrtumites… you know what I’m sayin’.

PS In case anyone is confused about this gap in the storyline: I am self-employed and when I decided to  “do errands” that was actually  some things I had to do for the business like paying for stuff and whatnot, instead of opening the retail store for business, because we never have any business because we JUST THIS WEEK opened for business and have no customers. So it’s not like I just skipped out on work or anything.

Autism Awareness vs Autism Acceptance

The notorious organization Autism Speaks has elevated the month of April as Autism Awareness Month. I have found over the past few years since self- diagnosing with Asperger’s Syndrome, that I strongly prefer the idea of Autism Acceptance. One small word could change your whole outlook when it comes to supporting your friends and family members on the spectrum.

When I hear of things like Breast Cancer Awareness, Epilepsy Awareness, or see the myriad support ribbons for things like hepatitis, HIV/AIDS, all kinds of cancers, thousands of diseases, and recognition for the survivors of these conditions, the farthest thing from my mind is neurodiversity. These conditions present health risks in and of themselves; autism presents no concurrent life-threatening illness.

Neurodiversity is not like the rest of these diagnoses. There was no “autism virus” that found its way into my body to wreak havoc on my sensory input preferences, or to attack my organs that are in charge of my social skills. My autism is not going to put me into cardiac arrest, nor are my autism cells going to take over the surrounding cells to form autistic carcinomas.

Autism is not a disease; it is simply a difference in brain structure, in mental abilities, and ways of thinking and experiencing the world. Of course, there exist what are commonly called “symptoms” of autism, and those can vary from making someone slightly different than a neurotypical person, to interfering with everyday functioning, to being downright painful to live with.

The aforementioned conditions have, and need, awareness in the form of donations, support, and recognition to study causes and possible prevention. A large part of these recognized organizations receive enthusiastic support from the people affected by the condition, and their families. They regularly dialogue with the affected persons and use their funds to make these people’s lives better. Autism Speaks does none of these things: they have no one that falls on the autism spectrum in positions within their member panel, and seemingly ignore input from actual autistic people. Their mission is to lessen the suffering of the families of autistic individuals and to research ways to eliminate autism altogether, instead of bettering the lives of autistic individuals themselves and helping them become self-sufficient.

Autism Speaks, the idea of Autism Awareness (as opposed to acceptance), and the general idea that autism needs to be prevented, goes against what a large part of the autistic community thinks. There is a strong movement for Autism Acceptance—to recognize the better parts of the diagnosis and manage daily life with the struggles that come along with it. It is a movement founded by individuals affected by autism who insist that they are not simply a burden to be carried by the family members unlucky enough to have found themselves in the position to care for them. These people wish to be accepted a world that, on the whole, tries to place them apart from the “norm” and deem them incapable of offering anything worthwhile to society.

For me, Autism Acceptance means seeing me as I am, with my positive aspects as well as my faults. It means supporting me when times are too difficult for me to even try to reach out; it means sharing my happiness even if it seems trivial to you, and especially if I don’t express it as overtly as you would like me to. Acceptance means understanding that my symptoms are not something I can control, but that there are ways to accommodate my needs. Seeing, understanding, and recognizing my specific requirements lets me function the best I can, and in turn, utilize my own skills for the benefit of everyone.

To accept my autism is not to simply tolerate my differences, but to recognize that underneath the mask I wear to “fit in” is an individual who is just as valuable to society as you are.

Why Can’t We Give Up our Title?

When I finally found out about this diagnosis that put a name to the weird stuff about me that had bugged me all my life, I was excited. I identified. I realized there were more people like me and I wasn’t just “weird” or “depressed” or “antisocial” or “different.” I had Asperger’s Syndrome.

Then they decided to remove the diagnosis of Asperger’s from the Diagnostic and Statistical Manual of Mental Disorders (DSM) and fuse this syndrome with Autism Spectrum Disorders. Of course I realize that Asperger’s was a part of the Autism Spectrum all along by definition, but in my understanding, it has different markers and characteristics that a large group pf people share, and therefore obviously qualified for its own entry at one point.

I was in my first few years of college when I diagnosed, and studying fine art at the time. I developed this kind of link to Asperger’s that might be deeper than you would expect. I researched the crap out of it (a thing I think a lot of Aspies do just because of our nature), planned made art pieces inpspired by and about it, wrote about it, joined forums and absorbed all the media I could about it (books, movies, tv shows, etc). Asperger’s is not the defining aspect of who I am, but it became a big part of my life.

Once I found myself firmly planted in the midst of Aspie society, they took our label away from us.

Some people eschew labels or are offended by them, but others appreciate them and the ease they bring of categorizing symptoms and generalizations. I was in favor of having my own category, my own little niche where, if I found out someone else belonged, I could already assume quite a few things about them and how they functioned, which, coincidentally, helped me out immensely in relation to social settings.

Now that most autism is “officially” grouped together again, like it was before Hans Asperger came up with our label, there is a whole spectrum that is now qualified with only “high” and “low” functioning, which, consensus seems to say, are not useful terms at all. And don’t forget about “Not Otherwise Diagnosed,” the least useful description ever.

Even though it’s no longer an official diagnosis, no one I know or have heard of has stopped using the term. I even laughed out loud when it was specified in NBC’s tv show Parenthood, that “technically, the diagnosis doesn’t exist anymore.”

I am curious to know why others don’t want to give up the identifier of Asperger’s Syndrome. Could it be out insistence on routine and aversion to change? Do others identify as strongly with the concept as I do? Is it just a more useful term because of the negative stigma attached to the word “autism” in today’s society? Maybe some Aspies even feel a kind of elitism that comes from being singled out from the rest of the autistic population?

In any case, I don’t see Asperger’s Syndrome dropping out of our vocabulary any time soon.

Education

Originally posted on September 29, 2014 on tumblr.

EDIT: This was a draft to answer an anon question about education (and also if its weird that they empathize more with animals than people). I remembered that I had answered in in one form or another, and deleted the question!

Luckily, I copied and pasted this other anon question to answer together:

Hi, i’ve been doing research for the past few months and am pretty certain i’m an aspie. i’m a 19 year old college student. a month into the school year, i am just so exhausted/constantly experiencing dissociation?? in the past, passing as nt hasn’t been too much of a problem unless you looked a bit more closely. or maybe passing as a socially awkward, introverted nt. but these days people notice that i’ve been shutting down in nearly every social interaction. i don’t know if i can do academia.

_____________________

My Response:

So let’s talk education. 

I did go to college, and I graduated with a bachelor’s degree in 2011.  (In the US, I know other countries have different systems). I double majored in Studio Art and Spanish, and only decided on that midway through my second (of four) year(s).

I have always been a very good student, so I had scholarships and I ended up choosing one college, I don’t exactly remember why I chose it, with a full scholarship. It was a religious college (Jesuit) and even though I went to a Lutheran High school, I defined myself as “not religious” at the time, but decided to go there anyways.

So I went to the “welcome weekend” the weekend before classes started, and it was.. okay. What I expected college to be. Kind of boring, not with the kind of people I had been friends with in college (“artsy”, “depressed” “dark”) Also, very religious. The first required reading for all students was a long book about the history of the Jesuits, and i don’t agree with that religion at all.

I had gone to some welcome events with my mother (parent’s events, you know). And we both were surprised that Mass attendance was mandatory but missing class was not as big of a deal.

Somewhat unrelated: I decided not to spend the night over the weekend.

So, on the way home, we passed another school I was accepted to, and my mom insisted that we stop, just to see what it was like at a different place.

I fell in love immediately, especially with the tour of the art building (I have always loved art). The tour guide seemed really cool, and we actually ended up having a few classes together and hanging out a little bit outside class later on.

The campus was MUCH MUCH smaller, and seemed so much more laid-back. I decided that night to switch, and enrolled there and started classes on time. My mom was extremely supportive of my decision, even though she had offered since I was a child to pay for my (and my sister’s) college bills and this would be more expensive than average, and obviously more than a full scholarship to the other college!

I absolutely loved everything about the place, from the students to the campus to the buildings to all my classes.

So that might not exactly answer your questions. I guess I would suggest that if you want to go to college, go on a lot of tours and see which one clicks with you. Check out the programs if you have a major in mind (I didn’t really, but I ended up with what I had been able to think of as a backup plan as my actual degree).

I also registered my second year (or was is the second half of my first year? Well, it was the semester after I self-diagnosed) with the academic resource center. They talked to me, gave me a sheet to fill out for my professors, and said they were “available if I had any problems” (which I didn’t so I don’t know exactly how helpful they would have been. I also ended up working there for a semester as a receptionist and a week as a tutor—which turned out horribly).

The sheet was a form letter that stated my disability, and a blank space to state any accommodations I might need. I remember I said I don’t like to volunteer answers, but I usually an okay answering if they call on me specifically. I also was unable to give presentations (although I was so comfortable with one class that I did give a short one, but very badly in my opinion!). I felt weird that I didn’t have a lot to list, but that was all I needed. I know some people on the spectrum might need extra time for exams, or to leave class if they get overstimulated, or other things like that, and I assume they would be okay with that, with prior notice. 

Then, they told me is was illegal for the teachers to come to me and ask about the accommodations (I guess due to the Americans with Disability Act?) so I would have to approach them about it. I only did so for I think two or three teachers, and it was so very awkward. But they were very respectful and said that everything was in order and okay. One teacher, though, was a temporary.adjunct professor so maybe they didn’t know the rules? I don’t know. Anyways, they asked to speak to me in the hall on the first day of class, and I started freaking out internally, knowing it was about the letter. But everything was okay, also respectful, and I explained what I had written, and what I might need from them. (As it turns out, that was the class I participated the most in).

So, ask for accommodations if you think you might need them. I did that the first semester, and then once more even though the teaching style at such a small school was very comfortable for me and I didn’t really need accommodations after all. I only did that for those two semesters, and the rest of the time I was okay.

(As for question number two, that was one of the clinchers for my own self-diagnosis: not showing as much empathy for humans, but relating extremely well to animals! I can read the most disturbing fiction you can possibly imagine about torture, murder, etc, and be fine with it, but if you mention abusing an animal, I cringe.)

Telling Time with Asperger’s

I had a hell of a time learning to tell time with analog clocks when I was a kid.

(No pun intended!)

This might have been linked to being bad at, or not wanting to try at, math. I finally learned, and I could read them but it took me a while because I would count by fives to get the minutes instead of knowing that 6=30 or 8=40. The clocks with just notches and no numbers were the worst. I still have to think about it and imagine the numbers where they should be if the hour is not 12, 3, 6, or 9. When I was in school, all the clocks were analog, so it was a necessary thing to learn. I didn’t have a cellphone back then (Gasp! I’m so old!) and watches were too big and annoyed me, so I didn’t wear them.

When I grew up and had my own clocks and could finally see high enough to look at the one on the stove and the microwave, I started to go by mostly digital clocks. I also had places to go and things to do, so I had a tiny digital bungee cord watch. Once cellphones entered my pockets, they became the default way to tell time.

Then I got a job and there are only analog clocks there. I wear a watch to know what time it is for breaks and such (since retail stores don’t have clocks, have you ever noticed that?). I got an analog watch for the reasons I am about to explain.

Since all that is now back to analog, I find myself having a hard time with digital clocks. For example, when I’m at work I get either a fifteen, twenty, or thirty minute break. So at the start of break, I look at my watch (or the clock in the breakroom) and count out by fives to see what time I will go back to work. Easy enough, right? Three skips for fifteen, four for twenty, etc.

The problem is, if I look instead at my cellphone, it’s hard to add fifteen or twenty or thirty to the digits. For example, when would fifteen minutes after 11:38 be? Or 4: 52? Analog is easier but still takes a second to figure out by counting the notches between numbers.

So that’s why I always take my breaks on minutes that are multiples of five.

A “Cure” for Autism?

Originally Published on Oct. 22, 2014 on tumblr

Someone on tumblr sent me a question asking my position on a “cure for Autism.” I thought this would be a good first “official post” for my new blog! I’ve edited my original response because I don’t think the first one made as much sense as I thought it did.

Most Aspies I have seen responses from about this is that they ultimately don’t want a cure because we see Asperger’s as a crucial part of who we are. Most of the pro-cure opinions I have come across are the so-called “autism moms” and people who don’t have much personal relationship with autism.

A simplified analogy of my opinion is this:

You are born Biological Trait A.

Trait A is not by any means 100% of your being or personality, but it has a profound effect on the outcome of personality and habit and everything else, as well your social life (what kind of self-image it gives you and if/how others react to it– and in this case, it directly affects social skills). After years of living with Trait A along with everything it affected and formed about you, it is an integral part of who you are, past and present as well as future.

Now imagine if a group of people who are opposed to Trait A, and instead favor Trait B– what they have and what it the majority. They say they want to change A and make it more like B.

If they had “cured” you early on in the past from having A, this would have had far-reaching affects on how you grew up, how your outlook and personality developed, and where you went in life. It would have completely changed who you are.

Sure, some of the more troublesome aspects of life would have been resolved for you. You would have been accepted into the general populace that was born with Trait B. You would have been much better at certain things you might have struggled with because of having Trait A.

On the other hand, you would have lost the way of life that Trait A gave you, and perhaps many of the great strengths and talents that went along with it.

Popular media tells us that Aspies have wonderful, sought-after traits like innocence, honesty, trust, unbeatable work ethic and drive, kindness, and compassion- (well, sometimes. Other times they say we are cold-hearted, unfeeling monsters, but I don’t believe that in the slightest.)

Aspies are seen as creative minds, brilliant thinkers, and problem-solvers. There are lists upon lists of famous historical figures and pioneers of their fields who are suspected or confirmed to have ASDs.

The basic idea of a cure is that the negative aspects of ASDs—-a lack of social comprehension, awkwardness, shyness, narrow thinking, and inappropriate bursts of energy (or lack thereof)—- outweigh the positive aspects like those I listed above.

It almost seems like social fluidity is more prized than worthwhile output, if that output comes at the expense of social fluidity.

If someone were to freely chose to partake in a cure, I would have no problem with that. The key word, though is choose. Hypothetical talks of a CURE FOR AUTISM all ring to me as if they would be more like eugenics, where the caregiver would foist the cure upon a child who has no idea of what is being done to them, in hopes of the child fitting in or not going through any negative consequences of the way they were born. If a person is capable of choosing for them self and debating the negative vs. positive outcomes of the “cure”, then I would have no problem whatsoever with their choice.

So, in summary, I for one am not in favor of a “cure,” or at least, not one that society forces upon anyone who falls under the umbrella of this disability.