Closure Part 3: What Could Have Been Done

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Sober Reflection About Sober Reflection

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Lessons About Meltdowns-- From My Cat

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Is It Ableism? Part 11: Advocating for Your Needs

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Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

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Is It Ableism? Part 7: Infantilization

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A Visit from the Monster

I've been having a case of The Monster all week. Just to remind you, The Monster is when I find myself in a horrible state of mind because of something I've done wrong. Actually, it's often more as a result of people's reactions to what I've done wrong. Even if the reaction is something as benign as, "You have to make sure you don't say things like that", it can trigger a cascade of intense, overwhelming emotions. I feel such horrible mental pain to the point that it's practically physical. I find myself angry at myself and hating myself. In fact, at work (it's a low-paying temp job) this week I had to go into the bathroom to cry. I was hyperventilating and I had to stop myself from howling from the agony I was feeling. I went back to my desk, still in tears, and a couple people asked me what was wrong. I told them that I was just going through a rough time, that it was "personal issues, you know?".

The slightest trigger can bring back a bunch of old memories, many of which I'd put to rest up until two years ago. What happened two years ago, you ask? Let me start by saying that two years ago I was in a better mindset that an I'd been in, well, ever. I'd lost 40 pounds, I was getting into excellent physical shape and developing athlete's heart, and my self-esteem was through the roof. I recall one day specifically when I had just left the Dodge YMCA in Brooklyn, reeling from endorphins from my latest killer workout. I walked toward the subway, plugged into my iPod and listening to a song that had a message of hope. It perfectly complemented the wonderful changes I was making to my body and my brain. At that moment I felt like someone could come up to me with an AK-47, shoot me, and the bullets would bounce right off.

That was early 2013. Then I made the biggest mistake of my life: I left New York City and took a job at a library in Maine. Yes, in my infinite wisdom, when I went back to school for library science, I thought it would be fun to concentrate in children's librarianship. I thought it would be fun to do activities with kids and that I'd just have fun with them. I mean, it was fun doing just that when volunteering at a New York library for seventeen months. But what I didn't count on were the parents, which were pretty absent in the library in New York that I volunteered at. The short version is that the parents in Maine constantly complained about me, saying that I was mean to their kids. I was finally fired after only four months when parents told the library director that their kids were afraid of me. I was 5'2" and weighed 122 pounds. I don't know what the parents thought I could possibly do to their kids, but truth be told, this wasn't the first time I've heard that people have said that they are afraid of me.

The Monster was awakened.

I bounced back and took a job in a library in Massachusetts. Once again, I was fired after four months. To my knowledge, only two parents complained about me. But the library director took those complaints very seriously. When parents complained about the other librarian, these complaints were just laughed off. Why? My shrink says she thinks that the director saw right away that there was something off about me and was thus more sensitive to my infractions. In fact, this phenomenon of not being able to get away with little things when neurotypicals get away with outrageous things is a very common Asperger's experience. Needless to say, I want nothing to do with working at libraries anymore.

The Monster was awakened again, and I haven't been able to put him to sleep. At most, he lies dormant, waiting for the next thing in my life to go wrong and to come back. When he does, he constantly whispers in my ear that I bring my problems on myself; that I cause people distress and misery; that I'm creepy, defective, and narcissistic; and that I deserve bad things to happen to me, both physical and emotional. He tells me that he hopes that somebody beats the shit out of me so that I get just punishment for all the problems I cause and my refusal to learn from my mistakes.

Just to clarify, this is not a literal voice-in-my-head. But it is very powerful. I have tried all week since the Monster's initial visit on Monday to neutralize him. I've gone running (even though I shouldn't because I still haven't recovered from an injury to me knees from last year) and I've gone swimming. It provides temporary relief, and I feel a little better since Monday, but it's not enough. I'm still reeling from some anger. I don't even know who or what I'm angry at anymore, but I just wish the Monster would die. The best I can do now is just wait until he lies dormant again.

Don't get me wrong, even when I was doing well emotionally the Monster would still come sometimes. But at the most he would stay for a couple hours and then I would be fine again. Now he comes for days at a time, and in this most recent instance, it's been closing in on a week.

I am just so sick of a lot of things.

I am sick of…

1. ...Knowing that if I get into a conflict with somebody, even if they're at fault, I inevitably have played a role in the incident.
2. ...People telling me "It's your overall personality; I can't even explain it", expecting me to just smile like this while they say it, something no neurotypical would ever be expected to do. In fact, BOTH LIBRARY DIRECTORS said this to me. 
3. ...That a lot of people in my life-- my brother, cousin (and yes, I'm close with both), and some of my friends who've known me longer-- feel entitled to wag their finger at me and lecture me like I'm a child.
4. ...My dad framing my life as a case of maturity. Even when he thinks he's complimenting me in that regard, it's a backhand compliment. He says, "You've matured a hell of a lot over the years." But he says it in a voice that sounds like, "God, you were so awful back then." To raise your consciousness, think about how it sounds telling someone with Down Syndrome who's improved in math, "You're a hell of a lot smarter than you used to be." It sounds like, "God, you were so stupid back then." 
5. ...Being expected to understand how everyone feels but then being told I shouldn't be expected for people to understand me. I'm supposed to shrug and go, "Okay, no problem" and, again, smile like this. Recently, my brother said of this, something like, "Yes, it's unfair, but you know why that is." 
6. ...Being expected to repress every little thing that comes naturally to me, whether it's my choice of discussion topic, my opinions, my sense of humor, or anything else. Sometimes I do this and then everything goes well, but it's exhausting. The dam breaks eventually, the holes in my mask form, and then I get lectured on how I need to learn to do A, B, and C, and not to do X, Y, and Z.
7. …Hearing sentences that start with, "You need to learn…" or "You need to work on"...
8. …Knowing that the stories I've related on most, if not all, of my blog posts are told from the point of view of an unreliable narrator and that I am missing one crucial element. My brother and one of my older friends have both told me that when I tell a story they know that if they ask somebody else, they'll have a story that's diametrically opposed to mine. My brother also recently said that I frequently have a very skewed version of situations, often with catastrophic results. 
9. …Of people asking me what I do for a living when I'm constantly in between blue-collar jobs, despite having a Master's Degree.
10. …Of the fact that most people have one or two skeletons in their closet when I have a whole fucking graveyard.
11. …Of being observed. I've been observed one way or another since I was a little kid, and by the time I was eleven I was pretty aware of it. It still goes on today. I'm sick of being observed, evaluated, gossiped about, told on, etc. I'm also sick of people like my brother telling me that nobody owes me answers when I ask exactly what happened that got people upset enough to tell on me, or what they said about me. It's easy to say that nobody owes you answers when this sort of thing rarely happens to you.
12. …Of people like my brother telling me that part of being adult is learning to repress my emotions. The problem is when I do that it only delays the inevitable outburst, which only makes things worse. My brother doesn't see whatever outbursts I have as an end result of repressing and repressing and repressing. He sees it as me giving into some emotional whim. Dad has the same opinion. Part of the problem is that, as I've said before, leaving a situation to cool down and prevent such things is seen as immaturity. 
13. …Of my pain being dismissed. If the Monster starts fucking my brain and I feel overwhelming emotions which I express, Dad tells me things like that I'm just trying to get attention and that I need to grow up. The irony? For years Dad understood me a lot better than Mom. And actually, there are still aspects of me that he understands better than Mom. But the deep psychological turmoil? Mom seems to understand it better (although this is a fairly recent development), perhaps because she has students who write in their journals about cutting themselves or being suicidal (no, I've never done/been either). I think only in the past few years have students come out about this sort of thing to teachers. They probably cut as much then as they do now but were shit-scared to talk about it, even in journals.
14. …Of having to think before I open my mouth or send an email or ask somebody something.
15. …Of having to expect that something will go horribly wrong, even if the situation I'm in seems wonderful at first.
16. …Of being told I'm not trying and that I need to try harder.
17. ...Of when something does go wrong, getting an entire fucking list of things that I did wrong, some of those things which still don't even seem wrong. When most people are told they've done something wrong, it's one thing, not a whole fucking list.
18. …Of never being allowed to be 100% right. Ever. 
19. …Of being told that I'm aggressive, too intense, and that I make people uncomfortable. Sometimes people don't even have a tangible explanation for these things when I ask for ones.
20. …Of feeling like I'm in a SIMS game. For those of you who don't know the SIMS, it's a simulation game where you take people, put them in houses, and let them develop relationships, get jobs, etc. A popular thing to do-- which my friends and I did in college-- is to "fuck with" the characters. We would build them a pool, let them jump in, and take the ladder away so they can't get out. Or we'd put them in a room with no door. Sometimes I feel like I am a character in that game and some higher being is fucking with me, watching me stumble through life.

In fact, I sometimes feel like the Universe is trying to put me in my place.

More on Maturity

"[Do y]ou ever feel like a little kid around people your own age?"

That was a question that somebody posted in an Asperger's group on Facebook the other day. I thought, "Oh, God, YES." Actually, I should clarify. I don't feel that way now at age 34, but sometimes I felt that way from adolescence up until my late twenties. In my last blog post, I wrote about how gender conformity is often perceived as maturity. Now I'm going to talk about some of the other arbitrary designations for maturity.

When I was in fifth grade (age 11), I noticed that all the other girls in my class were starting to get crushes on boys (or at least they appeared to-- I'm sure a few of them were actually gay). I felt like I was the only girl who didn't at least pretend to have a crush on a boy. Like many kids (girls especially, for some reason) with Asperger's, I couldn't see what the big deal was about "going out" with someone. That boy over there is cute? I didn't notice, and I really don't see what you're seeing. I just see another person who happens to be a boy. Dating? Kissing? Whatever for? For me that would just get in the way of my writing and drawing. In that same year, all the kids-- boys and girls-- were throwing around sexual slang left and right. Nearly every day I came home from school and asked one of my parents questions (usually my father, if I recall-- probably because his answers were more direct) like, "What does 'humping' mean?" or "What's a boner?" 

I learned the hard way that not at least pretending to have a crush on someone got me labeled as "gay"(keep in mind that in 1991- 1992, when I was in 5th grade, there were very few openly gay people) or "immature". I also learned that if I heard one of my peers using a sexual slang that asking what said slang meant would only earn me ridicule, usually in the form of being called names that indicated that I was immature or at least "out of it". I also remember being afraid to use the word "decibel" in that class when the teacher asked a relevant question during a science lesson. I thought my knowing that word would earn me even more ridicule (I was probably right). But why? Why does knowing "boner" make you "grown-up" but knowing "decibel" makes you a nerd?

I know what you're thinking-- what do 10- and 11-year-olds know about maturity? They're just repeating what they've heard in movies and they don't know what half of it means. Or, in terms of crushes, it's just something new for them so they think it means they're suddenly grown up. OK, fair enough. Except I continued to feel like a little kid all through adolescence and my teenage years whenever the subject of dating came up, no matter what the context. When I was in 8th grade (age 14), I recall one particular instance where my parents were talking to my brother (then 17) about school and his friends and in particular about whom his friends were going out with. I remember thinking, "This is the kind of 'grown up' talk that I'm expected to be part of, but I can't be part of. I don't know how."

Think that was just my perception? It didn't help when my mother kept nagging me throughout my teenage years, asking me whom I had a crush on. This was a topic I was enormously uncomfortable with. For one thing, my mother kept trying to engage me by pointing to celebrities on TV and saying, "He's cute-- don't you think?" That made me feel put on the spot. For another, when I got a little older and finally did start getting crushes, I refused to talk about it because the topic was too embarrassing for me. I experienced crushes very intensely and I knew that Mom wouldn't understand. When we had one of these conversations when I was 17, I tried to assure Mom that I had had crushes but that I just didn't want to talk about them. She didn't believe me and started lecturing me about how kids my age are interested in dating. She told me that I was at an age at which I was supposed to start feeling attracted to boys-- or girls, if I was gay. But I remember thinking that I found it hard to believe that every single person on the planet except me experienced romantic/sexual attraction on a regular basis. For me it was unusual (last year I learned this is called demisexuality), and I thought there had to be somebody else out there besides me who fit this profile. But what in the world did it have to do with maturity? Why not just another trajectory of development? 

I also recall a time when I was in the counselor-in-training (CIT) program at my summer camp when I was 17. The staff would not let me work with kids for the first half of the summer because my less-than-stellar social skills got translated as immaturity (nobody knew what Asperger's was in 1998). I understand now that they did have some valid concerns, but the same staff often did very appalling and unprofessional things that at age 17 I recognized were not conducive to running a summer camp safe for children. For example, a lot of the counselors did drugs. I don't mean on their 2 1/2 days off they went to New York with their friends and smoked weed (but I'm sure they did that as well). I mean they did drugs (usually weed, but probably more in some cases) on their breaks. They often even cut activities and let the other counselors pull their weight. During campers' rest times, the counselors often went to the staff lounge to smoke weed and left their kids unsupervised in the cabins. Even then I saw the clear hypocrisy in their concerns about me. I actually cared deeply about the kids and went out of my way to help them if something was wrong. But it didn't matter because of my lack of social savoir-faire.

As you might have guessed, at camp I had the reputation of being an anti-drug fascist. A fellow CIT finally asked me what I would do if I knew for a fact that a particular person on staff was doing drugs. I said something like, "Well, that depends. If it were something relatively harmless like weed, I would tell them how I felt about it and remind them that they shouldn't do it when they're supposed to be caring for kids. If it were LSD or heroin, I would probably report it because it's a safety issue for the kids." All the other CITs were completely stupefied and even upset when I said this. Why? Why were my social skills issues considered immaturity but doing drugs at a children's summer camp wasn't? Again, it's arbitrary. 

What I think it comes down to in all of the aforementioned cases is that people often mistake conformity as maturity. This is true whether it's gender conformity, conformity in expected psychosexual development, conformity in knowing the right slang, and above all-- conformity in social skills, even at the expense of doing the right thing.

Despite that uncomfortable discussion with the other CITs at camp, I didn't feel like a little kid around them. But that was the exception, not the rule. I often felt that I was much younger than my peers outside of camp because I just could not relate to them. I also felt like a little kid around people who were just a few years older than me inside of camp and out. This continued well into my twenties and it reached a crescendo when at age 27 I got a horrible crush on a Sergio, a guy 8 1/2 years older than me who had been a counselor at my camp in 1995. We had found each other on Facebook and hit it off immediately and became friends. However, he shunned me as soon as he figured out I had feelings for him. We haven't spoken since. That same year, my ex-best friend Melanie (1 year older) got married. She didn't invite me to the wedding and she cut me out of her life. Both shunnings were in 2008. It was a horrible year, and between the incidents with Melanie and Sergio, I felt like a little kid. I was not only too immature to have a friend 8 1/2 years older, but also too immature to have one of any age who was married. I began to feel that these little milestones that people take for granted were also a reflection of how immature I was. Because getting married wasn't on my radar, I was and always would be an immature little kid.

My feelings of being a little kid around my peers and people slightly older than me finally changed in late 2009 (age 29). I cannot divulge the exact details, but it did involve me becoming a regular on an Internet forum. People of all ages were interested in what I had to say. They thought I was interesting and intelligent and many praised me for my unique perspective. They didn't treat me like an annoying little kid who was dominating the forum (as did happen on a listserv in college). It was this kind of validation that I needed to be able to begin putting people like Melanie and Sergio behind me.

I hope this blog post gives everyone something to think about. I think it's important.

They are Hurting

I was thinking about some misunderstandings that I experienced while growing up. I think it's important that I share them. I hope this brief list will help clarify to parents what they are seeing in their children with Asperger's:

Children with Asperger's generally don't scream and throw things to get attention. Often they are frustrated because of how the world doesn't understand them. 

They are hurting.

Children with Asperger's don't hit themselves or engage in any other kind of self-harm to get attention. They are frustrated at the world for not understanding them and angry at themselves because they feel they can't do anything right.

They are hurting.

Children with Asperger's Syndrome who cry at the drop of a hat are not necessarily "immature". They are phenomenally frustrated and there is only so much frustration they can take.

They are hurting.

Children with Asperger's Syndrome who retreat into themselves are not doing it because they are immature, rude, or "not brought up right". They have too many emotional scars, possibly from bullying, and are afraid of experiencing further problems with others.

They are hurting.

Children with Asperger's Syndrome who storm out of a room in anger to get away from people who are frustrating them are not spoiled, selfish, immature brats.

They are hurting.

Children with Asperger's Syndrome don't hit the kid who was calling them names because they're "psycho". There is only so much they can take before they fight back, even physically.

They are hurting. 

Children with Asperger's Syndrome who cry because they were the last to get a lollipop are not upset because they're just immature and have to learn that they can't always go first. Rather, they are tired of being last at everything, left out of everything, even in a situation as trivial as this. 

They are hurting.

Children with Asperger's Syndrome are not crazy.

They are hurting.

I can only imagine how many people with Asperger's Syndrome were institutionalized back in more ignorant times. Those poor, tortured souls. Sometimes I imagine I would have been institutionalized had I been born in 1950 instead of 1980.

Define Maturity!

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