Drawing boxes

Well, I am officially off and running on my medical transcription courses. Within the next year, I will be a medical transcriptionist. Why is that so exciting? I will be able to work from home. I won't be so drained by work that I won't be able to do anything else. I'm excited to be learning again and have something to do with my mind. I'm doing the course through Career Step, and it's being entirely paid for by the Office of Vocational Rehabilitation, books and CDs and everything. This is the second time in my life that having a "disability" has done something good for me, made something easier. I'm being spared the $2000 it takes to go through this program because of my autism. In case you're wondering, the other time was the lines in Disney World.

We're getting there, I guess, with the Medical Assisstance and SSI, too. SSI is sending me for a "mental evaluation" by one of their own psychologists on October 14th. I'm very anxious about it. I have no framework in my mind for what to expect from this 2-hour appointment. What will they ask me? What if I lose my words before we're done? What if they conclude that I don't have autism, and I have something... else? That would certainly mess up my whole application process. Doctors can be really, really stupid, you know. In a way, my anxiety is going to work for my benefit, because it makes my autism symptoms show more. Still, it's not a fun way to feel.

The last piece of the puzzle for Medical Assisstance is a letter from my psychiatrist that explains my diagnosis, my capabilities, and what the doctor foresees for my future. The problem with that is as follows: my psychiatrist doesn't get it. Yes, she specializes is autism spectrum disorders. I've only met her twice, though, and she seems to think that because I can sit and talk with her for 15 minutes, I should be capable of living on my own. Can I go off on a minor tangent here? You've been warned. Here I go.

Doctors diagnose autism based on the DSM-IV, a manual that lists a set of criteria. If you meet the criteria (6 of the following 12, for example), then they will diagnose you with a given disorder. Especially with autism, the problem is that doctors don't adhere to the boxes drawn by the manual. The DSM says that there are three autism spectrum disorders (ASDs): Asperger's Syndrome, Autistic Disorder, and PDD-NOS (when someone meets most, but not all of, the criteria for Asperger's or autism). Generally, Asperger's is seen as less severe than autism, although I can guarantee you that the social issues present in a severe case of Asperger's can make that person more disabled than a mild case of autism. In order to be diagnosed with Asperger's, the criteria say that in childhood, the person must show no speech/language delay, no delay in self-help skills, and no lack of curiosity about the environment. Now, I spoke on time, even though my language wasn't conversational. The problem is that I did have a lack of self-help skills and lack of curiosity about the environment. I was, socially, in my own world. However, my psychiatrist's office ignores what the DSM says and, instead, decides that (this is a paraphrase), "People with autism act like there is no one else in the world. They don't care about people. They have very low IQs. They also don't have sensory issues." This frustrates me greatly, because they're drawing their own boxes for the ASDs instead of adhering to the way the DSM draws the boxes.

Why does this matter? For one, I have a thing about things being right. I like things to be right. I want my diagnosis to be right. If you ask anyone who is fairly familiar with ASDs, I don't quite act like someone with Asperger's. The best descriptor, even though it's not a diagnostic term, is high functioning autism (HFA). My severe sensory issues, language problems, significant auditory processing issues, and self-injurious are all more common in HFA than in Asperger's. The other big reason it matters, the huge reason, is for Medical Assistance and SSI. They're much more likely to give it to me if they write "autistic disorder" on that little paper than if they write "Asperger's Syndrome," as ridiculous as that may sound. It shouldn't be that way, but it is. But, the psychiatrist's office likes to draw its own boxes, as so many doctors do, and therefore, they have the potential to really mess me up. Just because I can talk to you in an office for 15 minutes does not mean... does not mean anything. It means that I can talk to you in an office for 15 minutes, not that I can not to you on the street, not that I could have talked to you 2 hours ago, not that I can talk to you for 2 hours in an office. Certainly not that I have Asperger's, not that I can live alone. Quit it with the box drawing, would you?

Breaks in the bathroom

What a weekend! I've successively made it through all of my obligations, I'm happy to say.

I got home from work Friday night and said "hi" across the house to the company, who was sitting down to eat dinner. I ran upstairs to change. I worried that they would try to hug me, and took a little longer than I needed to getting dressed. I hate when company hugs me. I don't even like it when my mom hugs me. Hugs are good, but only when I ask for them... and then, they have to be good and tight, or they're just painful. Company certainly doesn't know that, and they always do it wrong. I guess I sent sufficient "don't hug me" signals, because I didn't get any hugs. Whew.

It turns out that my mom's cousin loves cats. Loves, as in, she has 6 of them! We talked cats. We pet my cat. We talked to my cat. We talked more about cats. Cats, cats, cats. It was great. I told her how I love to sit and pet Elsie, but that Elsie sometimes likes to be her own cat. I said that someday I'd like to have a boy Maine Coon, which are known for being super loving and affectionate toward their humans. She said, "Well, if and when I see one in the shelter, I'll get him and bring him up to you." I told her my mom would kill her. Anyway, this company turned out to be alright!

Yesterday, Saturday, was such a long day. I had my morning counseling appointment, during which we discussed the ridiculousness that is the DSM-IV, along with the people who use it. People just don't fit into the little boxes that they've drawn! And then, many doctors like to re-draw the boxes of their own accord, complicating things even further. After a 4 1/2 hour shift at work during which I was sufficiently bored to tears, we went out to dinner at a fancy restaurant. The waitress was fussy at me about ordering not-quite-from-the-menu. They had barbeque fish, and they had grilled chicken; why couldn't I have barbeque chicken? Gosh. Then, because I need to stay gluten free, she fussed about the potatoes. She insisted that they contained gluten, because "potatoes are made of gluten!" Sigh. Okay, thanks for your advice, I'd like a baked potato. I had noise issues in the restaurant and spent a lot of time stimming. My stepdad kept telling me, "Put your hands down." I wanted to tell him to shove it, to be perfectly honest, but I didn't. It's so hard to be out with a dozen people and unable to follow/hear any of the conversation. I just can't handle background noise at all.

I started to text Leigh and did that throughout the meal, and that kept me from panicking about the noise. I stayed calm enough that I even went to someone's house afterward "for dessert" (although I couldn't eat the dessert). I did take one "break in the bathroom," though. Now, that's not to be confused with a bathroom break. I take sensory breaks in the bathroom wherever I go. I always worry that people will wonder what takes me so long. Nothing at all. I just sit and hold my ears for a few minutes. It's wonderful! Amusement parks, restaurants, church... I do it everywhere.

Today, I had my first meeting with the autism group. We met at a coffee shop downtown, where we tookover the bathroom and had it to ourselves to talk. I met a girl who is 25 and has HFA (in case anyone is wondering, "mild autism" or "high functioning autism" describes me best). She has a degree in accounting but works at the dollar store. She lives very close by and works just down the street from me. Her boyfriend, who also came, doesn't have autism. She's really nice, and I hope we can be friends. I also met a guy who is 23 and works at a gas station. He can drive, which he loves. He has Asperger's. He asked me lots of questions, from what I like to make for dinner to what kind of trash bags we use in the house. It was nice to sit and talk to someone, and I really liked him. I met a guy who is 27 and was diagnosed at a very young age with classic autism, told that he wouldn't amount to much. While he was certainly one of the more severe folks there, and his autism is evident immediately, he went to college and now works with an MHMR group as a one-on-one social worker and lives alone. My mom even met another guy's mom, and they got to walk around the shopping district and talk about us. I'm glad my mom got to meet someone. It's good for both of us to know that there are people like me out there, I think.

Anyway, there you have my weekend and how I managed it. I hope yours was as enjoyable as mine. I also hope that it included a cat :)

Trying to be flexible

We have family (my great aunt and her daughter) staying with us this weekend. That means that someone is staying in my room, and I'm sleeping on the floor of the spare room. The last time we had people over, we tried having me sleep on the couch, but I couldn't manage without a place to escape to. Hopefully having my own area, even if it's just a spot on the floor and a door to close, is enough to keep me calm when I get overwhelmed. I get really, really stressed with people in my house and things being so noisy and disrupted.

It's a busy weekend, too. I worked this evening. Tomorrow, I have a counseling appointment at 9am, then work from 10:30-3, then a big dinner outing with the family. Then Sunday, we're getting up and going out to breakfast, and then my mom and I are going out to meet the autism group for coffee.

I hope I can do this. I really hope I can. So far, Elsie is sticking in the same room as me, which helps a lot.

When big deals become little

I was watching Supernanny, another new favorite TV show, and the mom was obsessed with dressing her children just so. It made me think about how I no longer worry about what I'm wearing. I have extreme tactile sensitivity. I didn't wear a pair of jeans until 6th or 7th grade... everything had to be elastic waists or dresses. No lace, nothing scratchy. No buttons, because they require a stitch, and I can feel the stitch. Nothing sewn in, like a patch. Even elastic waists had to be wide enough that they didn't remotely cut into my waist, or I'd have a melt down. I wore jeans regularly from 9th grade until this past year, when they became unbearable again. In fact, lately, I'm extremely uncomfortable for an hour or two every time I have to change from one outfit to another and my body has to adjust. Yes, everyone wears jeans and what I call "nice shirts." And yes, I live in yoga capris and t-shirts in the summer, yoga pants and hoodies in the winter. I got over that being a big deal. I can go to class, go to the mall, at this point, even go to church like that. It's no longer a big deal.

Not that I completely don't care how I look. I like skirts a lot. They're super comfortable too, and I think they're prettier than pants. Since I only wear cotton t-shirts and cotton pants, I don't always look the most feminine, and I am a girl, after all. Anyway, I found two long, cotton skirts at the mall the other day, and I got two t-shirts with pretty designs on them to match. Now, I can go to church and look appropriate and be comfortable. Sometimes, I can find the best of both worlds!

Another thing that has ceased to be a big deal is my diet. Most parents fight with their kids about eating vegetables and healthy things, right? Not my parents. As a child, I ate and drank the following: apple juice, fat free vanilla yogurt, peanut butter, one kind of cheese, one kind of bread without the crust, margarine, small amounts of milk, pudding, and small amounts of ice cream on occasion. That wasn't the majority of my diet. That was it. For years and years, that was it. Between that and a myriad of gut issues, that's what had my mom going to doctors. My kid won't eat. I was always in the 90th percentiles for height and weight, but I wouldn't eat. Forget vegetables, my mom wanted me to eat pasta, drink milk, eat crackers, chicken. Normal kid things. Anything. A good day was when I eat three different things in the same day. I ate quite a lot of bread and butter growing up, and I ate a ton of yogurt. I was almost addicted to it, my mom said. Apparently a lot of kids who have gluten issues are like that. I'm happy to say that now, as an adult, I'm much better. I still can't do raw vegetables because of the texture, but I can eat cooked broccoli, green beans, carrots, and cauliflower. I can eat bananas, raisins, strawberries, and cooked apples. I can eat rice, GF pasta, GF breads and crackery things. I drink almond milk, and I eat eggs probably 4-5 days a week. Because we know where I came from, not being able to munch an apple to just go out to a restaurant just isn't a big deal to us.

The last "not a big deal" is one I'm still working on. I hate to cry or stim in public, but I definitely do both, and frequently. A lot of stimming can pass off for being fidgety, and that I'm okay with; I'd never be able to control that. But when I really get excited or frustrated or just when I really need to do it, rather than just let it happen, I want to go hide and get it out of my system. In case you're wondering, I often spend a few extra minutes in the bathroom when I'm out either to hold my ears or flap my hands. Also, when something goes wrong, when plans change, when it's too loud or too crowded, I cry. I hate doing it when people are around. I squeeze my hands and bite my tongue and do everything I can not to cry. Even when I get back into the car, or whatever, I still try not to cry. I want to be normal. I don't want someone to have to say, "Oh, she has autism." That's what it comes down to. I'm working on getting over that though, because the fact is, I do have autism, and it's not going anywhere. I shouldn't be ashamed of it. I should be able to let my mom or let Leigh say "She has autism. She's upset/excited, but she'll be fine, thanks," and keep going on with my day. It's just not a big deal.

Friendships

There are things about autism that are positive. I have a fantastic memory. I can read at the spread of light. When I can focus, I can really focus. I have a connection with cats like nobody I know, and I'd like to hang onto that, thanks. Then there are things that are neutral. Sometimes, I need to type instead of talk. My hands don't like to my still. I like to watch the same movie 50 times in a row. There are things about it that make life more difficult. At 21, I'm not ready to move out on my own. I can't work full time. My organizational skills... don't exist. But what I want to talk about now is possibly the most frustrating, the most isolating, the most debilitating aspect of autism: friendships.

Growing up, I had one best friend. I'd known her since I was 6 years old. I had this friend all the way through until we got to high school, when the pull from making other friends got to me too much, I think. Her other friends thought I was weird, and they made no secret of it. They blatantly wanted nothing to do with me. They forced her to make the choice between me and a normal high school social life, and I can't say that I blame her for the choice she made, but it certainly hurt. Aside from that one person, I've always tried to hold back, tried to contain what makes me different. It results in having acquaintences that are hard to maintain, because it's hard for me to act that way, and that are hardly worth having because I don't act like myself.

Before you say, "Just be yourself!" it's so not that easy. I want to just be myself, so badly, but if I did that, I'm fairly certain that anyone would go running the other way. Even around my very closest friends, those who really know me, I have to work extremely hard. I have to get the right words out. I have to remember to say "I'm frustrated" and not just yell at them, which would scare them off. I have to remember to use words, not tears. I have to talk about things that they want to talk about, even when I don't understand them. I have to figure out how to respond, and show I'm listening, because I'm almost always listening. I have to limit how much I talk about my cat. I can't help but think that anyone, anyone, even my own mom, would be run off by what and who I would be if I didn't work so hard to control myself. It's not easy work, either; it takes a lot of effort.

In general, I can do it. I wear a filter, all the time. Well, it falls off when I'm by myself, but as long as someone else is around, that filter is there. It's basically a filter of impulse control, that makes it so I can do everything I just listed above. But sometimes, that filter comes loose. I know that people can tell when it does. When my emotions are intense, it tends to happen. And every time it does, I'm afraid that I'm going to run off whoever it is I was around.

Friendships are really, really hard. I wish I didn't have so much ugliness in me that needed to be filtered. But, I do, and so I'll keep that filter on. The few close friendships I have are worth the hard work it takes. Autism, or anything else, isn't going to get in the way of that.

Big plans, I had

I had big plans. Yes, those were some big plans, I had. I was going to tell you something really, really exciting today. But alas, those plans have been squashed. I'm sorry, friends; this post will be a disappointment. Be prepared to get flexible.

My mom and I found a group of adults with HFA/Asperger's that meets in my city. Now, it's mostly men, and it's mostly Asperger's, but there's are a few women and girls, and a few with PDD or HFA. There is actually one other girl who has HFA, and I really wanted to meet this girl! I joined the group online. They were going to the baseball game today. Great! I suffered through 4 hours of work, made even more painfully slow by my anticipation, and we went to the ballpark. The group was meeting at 1:30 at the statue, but I had to work, so we got there at 2:30. The group leader (a parent of a boy with PDD) said that she would leave mine and my mom's ticket at the window. We parked. We went to the window and... no tickets. What? Yes, they had the leader's name, but no, they didn't have any tickets. What? Under the group name? No, no tickets. I'm sorry ma'am. No tickets.

No tickets. No game.

I. Can. Be. Flexible. I will not cry. I will not shout. I will not melt. I will be flexible. I will go into my own world, texting Leigh a few times, until I can come back out and be calm. And, amazingly, I did just that.

We got ice cream instead (Rita's chocolate ice with coffee custard, anyone? Mmm, ice cream). We looked at cats in the pet store. We got catnip for Elsie. Mom made it as good a day as it could have been, other than going to the baseball game with the potential of a new friend. When I got home, I e-mailed two of the group members (the girl who has HFA, and a guy who has Asperger's and loves cats). I explained that I missed the game today because of a mix-up, but that I really wanted to make a friend in the area, and what do they like to do? And I see that you like cats. I love cats. So, anyway, maybe that will go somewhere.

I'd been looking forward to this event for a month. Now I have to wait another month for the next event. Sigh. I'm sorry for the disappointing post, friends. Sometimes, you have to be flexible, though. I knew you could do it. And hey, you can be okay, because Elsie got some catnip out of the whole deal, and she's really cute when she rolls around in it!

Scattered thoughts

I don't really know what to write about. I can't focus enough to pick a topic and stick to it. Every time I start something, my mind skips around to something else. In general, I have a really hard time finishing what I start... at worst, it's hard to even finish a thought. This could be considered at worst.

Leigh suggested writing about how upset I get when my schedule is changed. Last year, we had plans to spend a weekend at her house, five hours away from school. When we had to reschedule for the next weekend instead, I shut down and didn't want to go at all. That's how I cope with schedule change. I just don't go to whatever it is. That can cause problems when "it" is work or class or something else that I'm expected to attend.

I considered writing about friendships and autism. Growing up, I had one "best friend" from down the street who I always played with, and that was it. When she started to make other friends in middle school, and I didn't, I just spent more time by myself. Then in 9th grade, when she realized that she basically had to choose between all of the "other" friends and me, because I wasn't "cool enough" to hang out with all of those girls (not to mention, didn't want to hang out with them), she ditched me. I didn't even play with other kids until I was in 2nd grade... I completely ignored them. Big surprise, eh? My one friend and I played very specific things... when she tried to get me to play Barbies, she'd always tell me, "You're doing it wrong!" Friendships have always been hard for me. At this point, I don't have any friends in my city. My closest friends are at the college I graduated from last year, an hour away. That's why I don't write about "oh I went here with so-and-so..." I don't go here with so-and-so. I stay home, with my mom. I have a couple of very, very close friends, who I know won't be scared away by the difficulties that autism presents. I'm so grateful for them. Still, it can be hard work for me not to run and hide from them when it gets to be too much.

I thought about writing about "sharing enjoyment." There are a couple symptoms of autism that I don't have, and that's one of them. Please, please laugh with me. I have a really hard time doing the whole pretending to be excited for someone thing. Example: my sister is shopping for her wedding dress. I love my sister, but I don't care about dresses. Yes, they're pretty. I will look at it and say "that's pretty," but that's probably it. However, I desperately want other people to feel excited about the things that I'm excited about, like the autism walk. Like cats. Especially cats.

Then, I thought I could write about the baseball game on Sunday. My mom and I found a local autism group that goes on social outings once a month, so on Sunday, we're going to the baseball game in the city. I'm excited, but I'm nervous, too. The few men with Asperger's in my social skills group weren't very much like me... what if I'm nothing like these people? I want to meet people who are like me. It would be a good feeling.

Anyway, there you have my scattered thoughts. I'm sorry they're not more together. I'll leave you with a picture. I went to visit my aunt and uncle's cats. They have 5. One of them, Murphy, is an orange Maine Coon, and he's massive. I'm talking a very, very big cat. He's beautiful, and incredible, and so much cat to love!