Oh happy day

I was really nervous going into today. Today was the appointment with the psychiatrist for the evaluation to determine whether I am "mentally fit to work," and if so, in what capacity. I didn't have any idea what I was getting into, what he would ask me, whether I would tell him that I have autism or not, whether he would pick up on it in a 2-hour long session. How was I going to survive the 2-hour session? That was the other issue. I put my pumpkin in my purse, wore a new cotton sweatsuit kind of outfit that my mom got me that actually goes together so I'd look put together (says mom), and kept a squishy toy in my hand the entire time.

It turned out to be a straightforward Mental Status Exam, which Leigh had to practice doing and practiced on me last year. I knew what was coming. It was even the exact same questions (i.e., the same numbers in the math problems, the same words to spell, the same proverbs to explain... which I still didn't know!). Once I realized that it was the same thing, I felt so much better. I could do that. I told him that I felt like I was cheating! He said that it's okay, because a lot of people get more than one MSE.

After 90 minutes of question after question, his conclusion was that I have autism and anxiety (but no depression). He thinks that I can work in some capacity, perhaps 16 or at most 20 hours a week, but no more, without shutting down. He's going to report that to the SSI people. I should hear within 30-60 days. He says that if I am denied, I should appeal, because I am really, really eligible for SSI, moreso than a lot of other people he says are eligible. So, time will tell what happens. Please send up a prayer about it!

After the appointment is when my happy day started. I looooove fall/harvest things, and it was time for Mom and I to go pick a pumpkin! First, we had to stop and get some pumpkin ice cream to prepare (mmm, ice cream!). Then, we went to the farm. They have a whole section dedicated to allergen-free foods, so we stocked up on some GF breads, animal cookies, cake mixes, and stuffing bits for Thanksgiving. I heard crazy noises coming from somewhere, and I followed them to find... a pig! And a cow, and a donky, and some goats and a bunny and sheep! I had never met a cow, and this little calf was adorable. See for yourself!

Then, finally, we found a nice, big pumpkin. I'll be at a bowling/out-to-dinner party with the autism group on Halloween, so we aren't going to carve it. I love it, in all its orange, pumpkiny glory. Here's mom and the pumpkin!

Walk Now for Autism!

I'm having a rough day, so I hope you'll forgive me for providing you with a just-the-facts run down of my trip.

We spent 4 hours in the car with no listenable radio stations, so we talked a lot.

We got to Leigh's and were greeted by a very excited kitty and a very wound up dog. Here's me and Joe:

We stayed up way too late giggling and goofing around Friday night.

That meant that we were ridiculously tired Saturday morning, so we had to drag our butts out of bed for the walk. We did as such, and we we went to Baltimore. We walked roughly 3 miles (we think it was a little less) in the rain, but we had fun. Leigh got an Autism Speaks puzzle piece magnet for her car, and I got an Autism Awareness one for my mom's car. Here are 2 pictures from the walk:

My version of eye contact :) Except not really, because Leigh was taking the picture, but that's still how it usually is

Then, after the walk, we went home and made a really good lunch of honey-mustard chicken and brown rice. It was delicious!

After lunch, we went to Leigh's family friend Susan's house. Susan has an orange-and-white cat named Marmalade. Marmalade is scared of men, so I told Susan how she can use positive reinforcement to get him used to men over time. I pet and played with Marmalade while Leigh and Susan talked.

Then, possibly the highlight of the trip for me, we went to Circle of Hope, which is a therapeutic riding center. I've been wanting to ride a horse for ages. I've only ridden once, when I was about 8. I didn't get to ride, but we got to watch 2 girls have their lessons, one of whom has autism. Leigh showed me around. I met a very, very old cat named Twix there who was sweet as could be. I also got to pet a ton of horses! They all put their noses through their stalls and wanted to be pet. Great big kitties! The horses are beautiful, and if/when my SSI money comes through, riding is one of the first things I want to do. I loved those horses!

After horses, we got Coldstone ice cream. I got pumpkin pie ice cream with white chocolate chips. Mmmm, ice cream!

From there, we went to visit Leigh's friend Tam about 45 minutes away at his college. His roommate is from Japan and is an awesome classical guitar player. Tam is super technologically gifted. For example, he's created a "party" button on his computer; it's a touch screen, and if you touch this button, all the lights in the room turn off, crazy lights go on the ceiling, and music starts playing with some crazy bass. Tam is a real character!

From Tam's, we rode back home and got Chinese. Mmmm...

We crashed early Saturday night. We were exhausted!

I guess I should maybe leave out this part, but the next thing that happened is that Leigh got sick. But it's okay, because she felt better when she got up in the morning. I said that I'm reporting the facts here, and those are the facts.

We got up Sunday and went to church.

Then I took a nap with Joey, who cuddled with me. My kitty doesn't cuddle like that. Ohhhh, Joe. There's just no kitty like him!

Finally, we hung out with Leigh's two friends Josh and Reino. Josh made Leigh and I free drinks(!) at Starbucks, then we went and got lunch at Chipotle. Mmmm, guacamole!

Finally, we headed home. And I slept well, I might add.

I challenge you?

In 30 minutes, I am leaving to go home with Leigh. Tomorrow morning, bright and early, we will participate in the 2009 Walk Now for Autism Speaks. Autism Speaks is currently working on a huge research project (in partnership with IAN, the Interactive Autism Network) about how adults on the spectrum are living. That's why I'm walking.

Here's the deal. I've raised $475. My goal is $500.

I was about to come on here and put it out to all of you in Blog World: come through for me. It's $25, and I know someone can afford to give it. It would mean the world to me.

But as I was writing my post, I was telling my friend D (uh, we refer to her by her last name, so I can't tell you who she is!) on Facebook. I was telling her how close I was!

You know what she said? Done.

I said. Think hard first! You're in college, you don't have money.

She said okay. You're my friend. This is so important to you. Thinking, thinking, thinking. Done.

My friends are the coolest. I'm off to Baltimore. Catch you on the flip side. And oh, there will be pictures.

The importance of a pumpkin

With autism, some behaviors fall under the criteria of the DSM-IV. For example, if you're ond of the people reading this who knows me in real life, you probably know that I don't make eye contact. That's in the DSM ("marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction"). You know that I absolutely love cats. That, too, is covered in the DSM ("encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus"). Or, you might recall the times that I've left the room during a social gathering or hidden in the bathroom. The DSM calls that "lack of social or emotional reciprocity, including preferring solitary activities."

But there's a whole slew of other behaviors that the DSM doesn't list. That doesn't mean that these aren't just as common in autism, pretty much across the board. One of those things is the sensory issues. My hating loud noises, not being able to tolerate raw fruits and veggies, and hiding from fluorescent lights are all sensory hypersensitivities. Another common issue in people with autism is processing problems. For me, the main issue is auditory. It takes me longer to process what I hear, especially in background noise. In fact, if there is a significant amount of background noise, I'll go so far as to say that I can't hear you... it's not a volume thing, though. Also, I can't follow conversations with more than one other people. I get lost really quickly. I'm not ignoring you, I just have no idea what's going on, so it gets hard to keep acting like I'm paying attention.

The thing that's popping up lately... I'm guessing that it falls into this second category of behaviors: ones that aren't listed in the DSM, but are fairly common in people with autism. I get attached to things. It started like it does with most kids; I had a blanket that I carried everywhere. Embarrassing moment, though. I carried it almost everywhere with me until Kindergarten. It went in my backpack to go to pre-school. I got really anxious without it, but if I knew it was tucked in there, I was fine. Over the years, the list included a series of plastic animals (I remember an elephant, a zebra, and a turtle), a block, a racquetball, a squishy ball, a sand-filled lizard... you get the idea. It's always something little, and it never makes a whole lot of sense. I just get attached, and that's that. For maybe a month, it goes everywhere with me, until it passes.

Fall is my favorite time of year. I was at the grocery store the other night getting Diet Coke (yes, I am addicted), and I saw the cutest little pumpkins, 2 for $1.49. I decided to get 2, not knowing what I would do with the second. I wanted to put one up in my room to decorate. It would be nice and festive. Well, one is on my bedside table. I took the other one to show my mom. Then I brought it by my computer with me. I brought it up to bed. And down the next morning. And back up for my shower. And... this is my pumpkin now.

This was all well and good until I had to go to work today. The pumpkin went upstairs when I got a shower, and back down so I could get my shoes on, and... uh oh. I had to leave. But, pumpkin! I was frantic. I was anxious. I needed my pumpkin. Now what? I strongly considered throwing it in my purse, but decided that it was ridiculous. For the record, this pumpkin is in no way personified. It is a pumpkin. I get that. But I need it! I went to work without it, and upon walking into the store, I regretted it. I was anxious the whole time at work. I had to pull out the cats (the pictures on a keyring) and look at those for a while, which made me stim, as cats will do.

I wish I could explain my need of my pumpkin. It's grounding. It soothes my anxiety. It's familiar. It fits perfectly in my hand. Holding my pumpkin is a little bit like a hug (a tight one, not a painful one!). It brings me back.

Tomorrow, the pumpkin goes in the purse. It's coming to work.

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.