Sunday, November 13, 2016

That Moment When Your Perception of Reality is Turned Upside Down

A few weeks ago I was at my shrink and talking about how frustrated I was about certain things related to Asperger's, and a strong suspicion that I have a non-verbal learning disability. In fact, I thought the two were intrinsically linked.

My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--

Wait, WHAT?

I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.

He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."

"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."

He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!

My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.

Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.

Sunday, October 2, 2016

One Quick Thing...

Lots of people I know tell me all the time not to compare myself to others. It's well-meaning, and I get it. But consider this:

It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.

So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.

Check your privilege.

Wednesday, August 10, 2016

Regrets... or Not?

In the summer of 1991, when I was 10, my then-13-year-old brother went to Camp Negev, a secular Jewish overnight camp. My mother asked me if I would like to go for a special two-week session offered to the youngest kids, and I declined. No, I was not going to go. That would mean interrupting my third summer at Art Camp (not its real name; for simplicity I will just call it that), an artistic enrichment program held for six weeks each summer at a small Quaker school.

Wood shop was my favorite class at Art Camp, and 1991 was the summer in which I started an annual tradition of creating and implementing an ambitious woodworking project. Most other kids just copied the projects that were on the display shelves, but I drew elaborate plans on graph paper from scratch. The counselors (most of whom were actually teachers from the school) always encouraged my projects, never once telling me, "You can't do that; it's too hard."

The summer of 1994 was my sixth and final summer at Art Camp. As I was entering 8th grade and just a few months away from my fourteenth birthday, it was the last year I was young enough to go to this camp as a camper. I decided then that I was going to do the most ambitious project of them all-- a model Pitcairn autogyro. Through lots of bumps and hurdles, I made the airplane over the course of the summer. I was very proud, and was glad that my final year at Art Camp had ended on such a high note.

However, I was very sad that I was too old for Art Camp and that I had to move on. I would miss wood shop-- and the variety of other projects I got to do at camp. In true Asperger's fashion, I approached each project in each class (except dance-- I'm a total klutz with anything that involves full-body coordination) with a single-minded focus. If I made any friends, great. If not, I didn't care. In fact, it rarely crossed my mind to try to make friends. I occasionally befriended a couple other kids, but first and foremost I was at camp to work.

The reason I finally decided to go to Camp Negev in 1995 was simply this: I had to have something to do in the summer, and I knew that my brother had loved the camp in the three years he went. At least in going there I would have some point of reference in terms someone I knew having loved it. The only other alternative, it seemed, was to spend the summer killing time with  flaky people I weren't even sure were my friends. My biggest fear about camp was that the kids would be just like the kids at school: I was sure that the girls in particular would giggle to each other, and then when I'd ask what was funny, they'd giggle again and say, "Nothing"; I was sure the girls would put makeup in the morning and constantly complain about how fat they were even if they were skinnier than Gandhi on a hunger strike; I was sure I would be bullied (although I didn't call it that back then, because I was convinced I deserved all the abuse I had received), and just as badly as I was in school.

None of these things happened-- like Art Camp, the camp philosophy emphasizes individuality-- but the beginning was rough because the aforementioned scenarios were all I had known. It wasn't until a counselor, Jonas, reached out to me and became my friend and mentor (for the next six years, no less) that I was able to be happy and comfortable at my new camp. I realize that if not for his intervention, I probably would not have returned the following summer. I not only did return the following summer (and also went on the post-11th grade Israel trip and came back for the post-12th-grade CIT program), but I also felt extreme regret that I had waited so long to go to give Camp Negev a try. I eventually became jealous of the other kids who had been coming since 1991; kids whose faces showed up in group photos; kids who would say, "Remember in '92 when this happened? Or in '94 when we did that?" and I was not be able to share these memories and laughs with them.

In fact, what I had really regretted about not coming to Camp Negev when I first was offered the opportunity was why: I was in love with the projects at Art Camp. It had nothing to do with the people; as I have said, friends hadn't been my priority there, but instead everything to do with the intense projects that I tackled there. I felt silly for that. After all, I realized, when people come back to any camp year after year, it's because of the bonds they formed with other kids, not because of things they got to make. At one point I began to wonder what was wrong with me that this fundamental point had never been obvious to me. For several years, I truly regretted the decision I had made to miss Camp Negev in 1991… and 1992, and 1993, and 1994.

But today? I don't regret my decision. Not in the slightest. I am still a bit envious of my campmates who had gone there since 1991, but I realize that doing so would have been a huge mistake on my part. I grew up in an era where this "weird thing" about me didn't have a word. Jonas hadn't started working at Camp Negev that summer (like me, 1995 was his first year) and thus wouldn't have been able to provide the crucial intervention I needed to help me feel comfortable socially and emotionally. And without the accommodations that would be made for today's campers, I realize how fantastically lucky I was to have a counselor like Jonas at all. I fear that had I gone in 1991, I would have had the same prejudices and fears as in 1995, but nobody would have been able to help me. I would have hated camp and never come back.

With 20/20 hindsight, I understand of course that my single-minded focus on projects instead of people was a blatant manifestation of Asperger's Syndrome. I don't regret this single-minded focus, and I do regret that I don't have it nearly as much as I used to-- I got more done in those days. When I scoffed at my younger self for having been this way, I was, of course, accepting societal norms about what is supposed to be important to people, and what summer camp is supposed to be. I have absolutely no regrets for going to Art Camp until 1994; I simply wasn't emotionally or psychologically ready for overnight camp, and even when I was, Jonas was a huge piece in this social awakening that I finally experienced. I am glad that I got to make my Pitcairn Autogyro in 1994, and it still is one of my fondest memories. Camp Negev may have been important for my social development, but Art Camp was important for developing my artistic skills and visual-spatial-reasoning skills, all of which mattered to me deeply.

I have wondered, however: what if I were growing up today in an era in which there is better education for camp counselors who might have to look after young kids with Asperger's? It would have been safer to send me to Camp Negev, and most likely I would have gone, and likely have come back year after year. But then because of these "interventions", I wouldn't have had the opportunity to make something like my Pitcairn Autogyro (unless, of course, my parents had found an overnight arts camp for me, which is definitely possible). I would have responded to the "interventions" and made sure to spend more time with people than I did. And would it been at the expense of the personal projects I was so passionate about? I don't know. But this is often a question that plagues me: At what cost is intervention for kids on the autism spectrum? This cost-benefit analysis is something I have wondered about for a few years now. I don't have the answer.

Saturday, May 28, 2016

I Hate Money: Part 2

As I illustrated in Part I, people are often judged by how much money they make: If you're 35 and aren't financially independent, you're lazy; if you mention having Asperger's Syndrome, you're just using it as an excuse; ultimately, there is some low-hanging fruit that you've somehow missed.

Recently, I had another horrible situation involving money. I took my cat to the vet for his long-overdue annual checkup (on my parents' dime, no less), and the vet said she was concerned about my cat's teeth. He had gingivitis, and she felt that X-rays and maybe even extractions were in order. She quoted me at $850. I told her I'd see what I could do. My cat hadn't gotten any dental care in four years because I couldn't afford it, and he's had issues practically from day one. I didn't think I could ask my parents for the money-- one time when I asked for money for a dental cleaning for my cat, my parents got upset at me (I know now that they didn't realize that this was a chronic issue for my cat; they'd thought I just wanted to brush his teeth). I was very concerned because I know that dental problems can affect other systems, and even increase the risk of a heart attack.

I went home and looked around my apartment for anything I could sell to raise the money. I had a ton of DVDs, and if they would sell on eBay, I could raise the money. But the keyword is if. Very few people buy DVDs on eBay. Why do that when you can just buy it for less on iTunes or stream it for free on Netflix? I then decided to do something I've seen people on Facebook do a million times-- set up a GoFundMe. I set the cap at $700, with the intention of paying the final $150 myself-- I felt that I should take on as much of the financial burden as I could. I thought that at best two or three people would donate, and that when the donations didn't add up, I'd end up refunding them. But to my great surprise, $100 came in in one day. So I posted the link to the GoFundMe on my Facebook page twice a day every day. I set it, however, so that my mother and brother (who are both on Facebook) couldn't see it. I felt that this fundraiser just needed to be done, and I didn't want to deal with what I thought would be the standard lecture of, "You don't do that! It makes you look irresponsible!" or "Just posting it on Facebook will make people feel pressured!" or even, "What if potential employers stumble upon this when they Google your name? What would they think that says about you?"

The money came in, slowly but surely, but it wasn't without any backlash. I asked a few people in direct messages-- in most cases during a conversation, rather than a sudden message from me with the query-- and I was careful as to how I phrased it. Rather than saying, "Can you donate to this?" or something to that effect, I said, "Would you be interested in helping me with this? If not, that's OK." One friend said, "I wouldn't have a cat that I couldn't afford." Then she got upset and said that her parents would never pay her rent like mine do for me and that they hold her to higher standards. Because life has been so shitty for me for the past three years, that hit me pretty hard. The implication seemed to be that I was a spoiled kid from rich parents who just gave her money whenever she wanted it, and didn't expect her to pull her weight. This is absolutely not the case. Ultimately, my friend and I talked it out, and she apologized profusely, saying that she'd been having some problems of her own lately and that I'd caught her at a bad time. She eventually donated. Although my friend said what she said when she was having a bad moment (it happens to us all; she is a good friend and very kind otherwise), it made me wonder if what she seemed to imply was true. It sucks to have to think that way.

I also run a Meetup group. I sent an email to the group telling them about the GoFundMe. I started it with, "I know this is a bit unorthodox, but..." and, of course, said, "If you would rather not donate, that's OK too." I sent this message three times in the period of a month. On the third time, a woman responded by reading me the riot act, using loaded words like "egregious", chastising me for my "brazen gall", saying that she was "flabbergasted by [my] audacity", and that I was "abusing [my] role as a leader." Then she said that she went to my GoFundMe page and was suspicious by how many people from the Meetup had donated (it was 4 people out of 22 total donors). When I finally told her I had Asperger's and, in the heat of the moment, said, "Clearly my social skills and judgment are shitty", she said, "Excuses, excuses." Thankfully, she left the group.

I then emailed someone who'd just donated literally moments before to make sure she hadn't felt pressured. She said that she hadn't felt pressured, and then said that she donated because she doesn't like to see animals suffering. Then she went on to tell me that I was irresponsible for not having pet insurance (which, incidentally, is incredibly expensive).

For the record, I hate asking people for money. I even hate asking my parents for money. I did this GoFundMe because I didn't know what else to do, and I didn't want to have to worry about my cat having some long-term health problem that would cost thousands of dollars or that would kill him. I would never have asked for donations to, say, pay off a credit card or to buy the latest iPhone. The irony is, that when I finally did tell my parents, their response was, "Why didn't you just come to us?" As I mentioned before, I thought that it would upset them. I'm glad to say that I was wrong. I'm also glad to say that they thought there was nothing wrong with me doing a fundraiser: If people don't want to donate, they don't donate. My parents, if anything, were upset at the people who judged me and spoke to me with self-righteous indignation.

As you can see in this blog post and its predecessor, I have been judged in a variety of ways for not being financially independent. In most cases, the other people didn't know what I have been going through, except in the case of Chris, who knew but wrote it off as me not trying. I have this to say: Walk a mile in my shoes before making such harsh judgments.

As for my cat, he had the procedure yesterday. He had four extractions. A frivolous fundraiser, indeed!

I Hate Money: Part I

Whoa! Sorry for the long lapse in posts. Life has been pretty hectic and stressful lately. That said, I hate money.

Yes, I hate money. I hate how much money dominates our day-to-day decisions. I hate the fact that I don't have enough of it to make ideal day-to-day decisions. But more than anything, I hate how people are judged by how much of it they have. And for the past two months in particular, I've been under a lot of stress related to such judgments.

 I have a Master's Degree and I'm lucky if I can land a job that pays $13.00 per hour. Welcome to the world of living with being a woman who has Asperger's Syndrome. Right now I'm taking web development classes in hopes of becoming a web developer and finally, finally, FINALLY becoming financially independent, but it's been a real uphill climb. In the meantime, I had a falling out with an old friend, and a lot of it had to do with judgments based on how much money I make.

To be fair, the "friend", who I'll call Chris, was never someone I felt close to. I only saw him about once a year (he lives in Connecticut) and I found I could only take him in small doses. He, too, is on the autism spectrum, and the honest truth is that I generally don't get along with autistic men. In general, for reasons that are not yet understood (one hypothesis has to do with prenatal testosterone levels), autistic women and men present very differently, almost as if they're speaking two profoundly different languages. I just don't find that I can be on the same wavelength as them. But that's just me, and I hope this isn't perceived as a judgment call about autistic guys. Anyway, about Chris: He is a web developer, and he most likely makes a ton of money. I don't know how much, but obviously enough that he has no problem sneering at those who don't.

Last year on Facebook, Chris said that those who have Obamacare -- knowing full well that I have it -- are lazy. Then he said nothing while one of his friends chewed me out and told me to stop sucking Uncle Sam's teat. After the whole thing blew over, I decided to write it off as him being autistic (he is much, much more profoundly autistic than I am) and not realizing how he came across. But the personally insulting posts-- while not necessarily directed at me-- went on. I began to seriously consider unfriending Chris in every sense of the word when he posted a status that said something like, "I'm sorry I've ever heard of autism. I know at least three people who use it as an excuse for not being successful." I called him on it, reminding him that both of us went to art school (which is where we met) and this aspect threw a monkey wrench into things for me. Then he asked me, "Well why was your friend Flora successful?" (Flora is a friend who has had a very successful animation career). Then he asked me about a film that I had started several years ago but "refused to finish." His words, not mine.

Once again, it blew over. But I was extraordinarily upset that Chris, who used to be the kind of person who'd give the shirt off his back for anyone who needed it, was judging me for not being financially stable like he is. He's even left posts that he thinks people who can't afford health care should be left to die. In short, he has become a right-wing libertarian, and is starting to sound like Donald Trump.

The straw that broke the camel's back came about a month ago when Chris posted on Facebook, "Why do people with Asperger's seem like they are either the smartest people in the room or they are not only annoying and obsessive (while failing at life in so many ways), but actually love being that way?" Again, I don't think he was necessarily directing that at me, but it hit me pretty hard. He knows I've been struggling for a very long time, and he knows that I feel like a failure. Once again, I called him out on it. He essentially shrugged it off. I didn't unfriend him on a whim; I sat on it a week before doing so. I think I'm pretty reasonable; if he contacted me to try to work it out, I would be willing to listen. But he hasn't done so, and I feel that I'm well-rid of him. And I have no reason to feel guilty. He has plenty of friends, and is even engaged. Who knows, maybe this woman has been a bug in his ear.