Aspie New Year 2012

January: I started the new year with one of my little Chickens (CT) at Sea World. It was my first big post diagnosis outing and quite a success. I learned a lot from it (like where the restaurant we always visit is) and I think CT did, too. Throughout the last year, she’s been like my shield. If we go somewhere crowded, she guides me through where she can and helps me escape it when it gets to be too much.


February: After about six weeks of one epic realization after another, I hit a bit of a wall. The awareness of just how affected I was by external stimuli had set in and I was in a near constant state of sensory overload. Why, at the age of 34, was I getting worse? Because I was burned out. Read this wonderful piece from Rachel Cohen-Rottenberg for a stellar description of what Autistic burnout is like.

http://www.journeyswithautism.com/2009/06/29/why-i-cant-do-what-i-used-to-do/

March: The great earplug experiment began and changed my life. There are few things I enjoy more than the moment when my foam earplugs fully expand and block out so much of the noise that sets me on edge.

April: It seemed like therapy was finally getting me some results. I learned new techniques for coping and my anxiety was enormously reduced. I also made up my mind to get off my fat ass and start getting some serious exercise.

May: I got to play with dolphins on CT’s birthday. Yes, they are the assholes of the animal kingdom, but they’re so entertaining.

June: My morning walks were regular and exciting. I was proud of myself for sticking with something as challenging for me as walking every day.

July: POTTER!!! Yes, I’m a nerd. So what? My friends and I put on silly costumes and attended the midnight show of the final Harry Potter movie. As luck would have it, since we went to the Universal Citywalk theater, we also got to spend from 3 AM to 5 AM in The Wizarding World of Harry Potter. It was crowded, it was chaotic and it was exhausting. I spent most of it sitting outside the owlery and people watching so I could stay out of the crowds. Unfortunately, I also got violently ill on the way home.

August: I had been feeling run down after the Potter experience and had stopped my morning walks. Then came the pain. My Rheumatoid Arthritis flared up after two years of being held at bay with vitamins. Back on all my many medications I went.

September: And then I was 35. I refuse to say more on the subject.

October: It was an eventful month. Steve Jobs died, I got some much needed closure, Ninja was faced with school bullies and I went to a wedding. On purpose. And I enjoyed myself! Yay me! Bigger yay for the Chicks for helping me through it and the happy couple who made sure we were at a table of awesome people.

November: On the roller coaster that this year has been, November was a Double Down Drop. (See http://themeparks.about.com/cs/coasterbooks/a/coasterspeak.htm for a definition.) First I met my new boss and he made a joke about my AS that made me very uncomfortable. Then he told me he was taking my office away. This was devastating news.

December: The fight for my ADA rights continues and I will have a letter for my boss next week. Christmas was rough because of the stress and anxiety at work. All I wanted was to stay home and sleep. I haven’t been this depressed in a very long time.

2012?

Well, who the hell knows? I want to have a kick ass year. I want to be at this point next year (provided the Mayans were wrong) raving about how EPIC 2012 was and how great my life is. Going into 2011, my theme song was Uncharted by Sara Bareilles, mainly because of the line “Each day I’m counting up the minutes ‘til I get alone, cause I can’t stay in the middle of it all.” For 2012, I’ve chosen The Good Life by Weezer. Aside from being from a male point-of-view, it sums up what I’ve been through and what I want for the new year very well.

When I look in the mirror, I can't believe what I see

Tell me, who's that funky dude, staring back at me?

Broken, beaten down can't even get around

Without an old-man cane, I fall and hit the ground

Shivering in the cold, I'm bitter and alone

Excuse the bitchin, I shouldn't complain

I should have no feeling, 'cause feeling is pain

As everything I need, is denied me

And everything I want, is taken away from me

But who do I got to blame? Nobody but me

…And I don't wanna be an old man anymore

It's been a year or two since I was out on the floor

Shakin' booty, makin' sweet love all the night

It's time I got back to the Good Life

It's time I got back, it's time I got back

And I don't even know how I got off the track

I wanna go back…Yeah!

Life is short, kids. We only get so much time, so why waste it being miserable? 2012 is my year to find my happy and fucking OWN it. You get out there and own yours, too.

The Aspie Experience

The room is white with large doors on the left and right. Towards the back, there is a desk, a computer, a telephone and a chair. When you enter, you will sit at the desk and be given a series of tasks to complete.


The first is simple. Dial a phone number and carry on a ten minute conversation. What you discuss is not important. Talk about the weather, if you want to. Just pick up the phone and begin.

As soon as you begin your conversation, several people will enter the room from the left and right doors and they will begin to converse with one another around you. As many people do, they will move about and gesture within your line of sight as they talk amongst themselves. Because you are not an Aspie, you may be able to ignore them – to tune out their voices.

To ensure that you get the full Aspie experience, the people will make certain you can’t ignore them. They will ask you questions and poke you and invade your personal space as you attempt to complete your phone call. You may notice that is becoming progressively more difficult to listen to what the person on the other end of the line is saying. They may become impatient with you asking them to repeat what they’ve said several times.

Once the ten minute phone call is over, the exercise will be repeated. This time you will attempt to carry on a conversation with a person in front of you instead of on the phone. In addition to the multiple conversations around you, there will also be four televisions (one on each wall) turned up quite loud, each with a different program showing.

When this is over, you will be quizzed on the things discussed both in the phone and face to face conversation. It is likely that you will remember very little having been so distracted during both.

When this section is complete, we will move on to a different task. You will be given a series of basic puzzles to solve on the computer. Each has a time limit and will require intense focus to complete. Once the timer begins, you will experience the same distractions as before: loud conversations, questions, being touched, televisions, and so on.

The final test requires nothing from you but to remain calm and relaxed. The furniture will be removed from the room, but the other elements will remain. There will be additional people crowding the room and jostling you as they interact with one another. Music will be piped in over the voices and televisions and multi-colored strobe lights will go off intermittently. Other sounds, such as crying babies, cellphone ringers and barking dogs will add to the cacophony. Various smells will waft by – perfumes, cooking food, trash, etc. You will also be wearing an itchy sweater while the temperature in the room is increased. How long can you keep your cool?

I’ll be waiting for you on the other side. Maybe now you’ll have a little more empathy for me.

Welcome to Depressionland!

America’s newest theme park is open for business! Enjoy such classic carnival rides as: The Mood Swings, The Emotional Roller Coaster, The Self-Pity-Go-Round and the Tilt-A-Weep. While you’re here, visit the House of Neuroses, The Anxiety Slide and even play Whack-A-Phobia. Our delicious, carnival-style foods feature Corn Dogs, Funnel Cakes and Deep Fried Prozac. We’re open 24 hours a day, 7 days a week, 365 days a year. Check out these rave reviews!


“Depressionland is like Disney World for my shriveled, black soul.” – Sylvia Plath


“Visit another theme park? Nevermore!” – Edgar Allan Poe


“Better than an opium and laudanum cocktail.” – Charles Baudelaire

Yes, I know depression is serious. That’s why I’m making jokes about it. That’s what I do when I’m dealing with something shitty. I’d love to just shrug it off and say “it could be worse” (because it could) and move on. I’m not wired that way. Depression isn’t some sweater you can take off when it gets too heavy. It’s just there. It weighs you down and makes you feel like you’ll never escape it.

J.K. Rowling created the best metaphor for depression I have ever encountered – Dementors. If you’re not familiar with the Harry Potter series and its characters, here’s a quote from Harry Potter and the Prisoner of Azkaban.

"Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life."

That’s where I am now…in the presence of Dementors. Unfortunately for me, there’s no such thing as a Patronus charm, so for now, I’m stuck. If anyone needs me, I’ll be on the Self-Pity-Go-Round.

Merry Christmas

Here's hoping the holiday brings joy and love to you all.  There's a new year right around the corner and that's a gift I'm very happy to get.  Happy Christmas, Hanukkah, Kwanzaa, Solstice, Festivus...whatever you celebrate.  Just have a good one this year.  If the Mayans are right, it could be the last!

Letter to Santa

Dear Santa (Because it worked for Amy Pond),


It’s Christmas tomorrow and I’m miserable. This has been one of the worst weeks I’ve ever had at work and I’m miserable. I don’t want presents from you. I just things to go back to the way they were. I want to go back to not hating my job and being able to go home and feel like I’m a person, rather than a collection of illnesses and exhaustion.

Life is short and mine will likely be even shorter. I don’t want to spend the rest of my life feeling like I belong on The Island of Misfit Toys like the train with square wheels – completely unequipped to function in the world.

Santa, I’m not asking for a hot boyfriend or to magically lose weight or to win the lottery or even for my RA to go into remission. All I’m asking is for you to make things suck less. Not even, “I want to be happy.”…just, “I want to be less miserable.” I don’t think that’s asking a lot. And don’t tell me this is supposed to build character. I have more than enough of that, thanks.

I have had two previous Christmases where I was this low. One involved work and the other involved depression. This time it’s both. I’m going to hang my stocking and hope you put a solution in it. Don’t be a dick, Santa. I’m counting on you.

Time For a Rant

I realize this is getting repetitive and is probably boring the fuck out of you, but I’m going through some shit and I have no idea how else to cope. Disability Rights Florida responded to my query with several other places to contact for help. Hopefully one of them will pan out, because I can’t take much more of this. I’m literally pulling my hair out.


All I want is for things to go back to how they were. With the HP rep on my manager’s side, I feel so powerless. It’s like they don’t believe AS is a legit disability and nothing anyone says will change their minds. I had a nightmare that I got fired because I had a meltdown caused by the conditions in which I’m being forced to work. The last time I felt this miserable and hopeless was two years ago, right before I started therapy.

Christmas is just a few days away and I just want it to pass me by. Christmas music makes me sad and all the gaudy decorations in shopping centers seem too bright and busy. I just want the season to be over. Apologies for being such a downer…I’m just feeling very angry and depressed and stuck.

Attempting to Self-Advocate

I’ve contacted a disability rights group with the following message:


“I have Asperger's Sydrome and Rheumatoid Arthritis. I have worked the same job for 10 years and new management is taking away the things that allow me to be productive and not excessively stressed. For example, I have always had my own office with a door I can close. The combination of that and foam earplugs allow me to block out noise. The closed door also blocks distractions from my field of vision. My office is being taken away and the compromises offered have not been given. I was offered a headset that was to block out sound, but one that blocks out none was purchased. I have repeatedly expressed my need to stay where I am and am told that I have no choice in the matter. As part of the "transistion" my manager has insisted I start leaving my office door open, which led to a meltdown due to the endless noise. The only things they have followed through with is to get me a chair that is more supportive and to put in a handicap parking sign. Human Resources at my company is supporting the manager.


My manager has also made jokes about Asperger's Syndrome, including pretending to lunge at me because of my personal space issues and to laugh at my sensitivity to light. He has also told me more than once regarding the stress that the noise and chaos of being out of my office causes me that I will "get used to it." I attempted to explain that Autism isn't something you can get used to, but he does not listen. I have never had to worry about seeking advocacy or requesting accommodations before, as every previous manager has worked with me.”

The headset I was promised is not at all what I was told to expect. It only covers one ear and, even wearing a foam earplug in the uncovered ear, blocks out NO noise. I was told to keep my office door open starting this past Monday and it was excruciating. I had a massive meltdown by 1:00 PM the first day. What’s even worse is that the loudest of our employees is on vacation this week. I don’t know what I’ll do when he gets back. I absolutely cannot work like this. It’s not like I’m even asking for new accommodations. I’m simply asking them not to take away the ones I’ve had for ten years!

Was The Grinch An Aspie?

Sit down this Christmas season and watch How the Grinch Stole Christmas (the 1966 cartoon…not the live action travesty) and look at the Grinch versus the Whos as an Aspie versus a town of NTs. It might give you some insight about people like me.


What was it the Grinch hated so much about the way the Whos down in Whoville celebrated Christmas? “All the noise, noise, noise, noise!” I feel you, Grinch. I do. Like so many Aspies, the Grinch prefers to be alone, living atop Mount Crumpet with only his dog for company. His need for quiet is overwhelming and the endless disruption of it drives him to a state of bitterness and hatred.

The narrator doesn’t get it. He tells us that the Grinch’s heart is two sizes too small…or that his head isn’t screwed on right. Naturally it’s all Mr. Grinch’s fault that he can’t conform to what the rest of Whovillian society expects.

I’m not saying it’s okay to try to destroy a holiday enjoyed by many, or that I agree in any way with how the Grinch deals with the situation. I’m just saying it doesn’t seem fair that things had to get so bad that he felt he had no other recourse. Why didn’t anyone see that he needed help?

Unlike the Grinch, I don’t hate Christmas. I don’t have a problem with the size of my heart. A Christmas morning Who song will not magically make me able to tolerate “All the noise, noise, noise, noise!”. The Grinch is not a perfect analogy. If he were truly an Aspie, no amount of heart growth would make him want to be smack in the middle of the Whoville Christmas festivities.

My point is simply this, before you judge someone who wants to be left alone or try to tell them that their intolerance of noise is just an overreaction, remember that it goes both ways. You enjoy your flu-flubas and tartinkas and I’ll take my plate of Who Pudding and Roast Beast over to this quiet corner and we’ll each enjoy Christmas our own way.

Having the “Wrong” Reactions (And an Update on the Work Mess)

I once made someone very angry because I asked for their reasoning behind an opinion that I disagreed with. I wasn’t trying to be disrespectful or argumentative. I wasn’t trying to change their opinion to match mine. I was simply curious. I wanted to understand why their opinion was different from mine. It never occurred to me that I shouldn’t ask because it might be interpreted as rude or confrontational. I just wanted to know.


I also tend to joke around when I’m uncomfortable, but because I have that special brand of quirky Aspie humor, it often makes me seem insensitive or just plain weird. As I’ve become more aware of this, I’ve become more likely to clam up for fear of saying the wrong thing. The more I realize how different I am, the more withdrawn I become.

The desire not to make social mistakes weighs heavy on me, now that I know how many of them I make and how often. It adds to the social anxiety I already felt and makes me nervous about interacting with people I’ve known for years. I’m endlessly afraid of accidentally offending people. I wish I didn’t care, but I do.

On top of all of that, I’m constantly faced with people who have such a twisted understanding of people like me that I feel like I’m banging my head against the wall. The situation at work is the perfect example. This week, we’re starting the “transition” to the move out of my office. I’ve been told to keep my door open. This is so very difficult for me. People are constantly walking by and the noise is so distracting. A binaural phone headset was supposed to be the compromise on the noise levels, but when it arrived, it was not at all what we discussed.

http://www.hellodirect.com/hellodirect/Shop?DSP=30200&PCR=1:1:5:15:150:1040&IID=13478&imagesequence=

This is what arrived on Friday. You can see it only covers one ear, rather than the two I was expecting. Now I have my door open, a headset covering one ear and an earplug in the other and I am a wreck. I was having muscle spasms from the tension by 8:00 AM and a headache by 9:30 AM. All I want is to close my door and get some work done, but it is not happening. I can’t help but fear being fired when management is creating a situation that makes it impossible for me to be productive.

The Great Puzzle

I was stuck in traffic behind a car with an Autism ribbon the other day and it got me to thinking about the use of multi-colored puzzle pieces as the symbol for Autism. I get that Autism is puzzling in terms of what causes it and why Autism is so different in each Autistic person, but I resent feeling like there are people who think that I am a puzzle that needs to be solved, as if I’m somehow broken or incomplete.


The more I stared at the ribbon, the more I thought about it. With everything that has been going on with work, the idea of there being something “wrong” with me is all it takes to set me off on a rant about how good I am at my job. I have rocked my AR job for years, not in spite of being an Aspie, but because of it. Hyperfocus, repetition, and the ability to look at things differently…those are my strengths and I have them because I am Autistic.

I’ve not had to give a great deal of thought to my needs at work in relation to having Asperger’s Syndrome. Having my own office, where I can wear earplugs and not answer the phone has provided all the “special accommodation” I need. Unfortunately, my new boss is trying to take all that away from me, despite my attempts at explaining the importance of staying put.

So now I come back to the puzzle symbol. And it hits me.

I am not a puzzle, but how I live my life is. Imagine if every human response to social situations and various stimuli were color coded. A love of loud, busy settings is “Red”. Preferring to stay in and have a quiet evening is “Blue.” Taking charge and/or being aggressive are “Green”. Nurturing others is “Pink”, and so on. Everyone gets to pick and choose which colors with which to piece together their own worlds.

Most neurotypical people would choose only one or two colors. Many Autistic people would do the same. For me, it’s not so simple. In one instance, “Green” may be the way to go. In another, I’ll choose “Blue” or “Pink”. Because I cope with different situations and stimuli in so many ways, my life is a beautiful mosaic, alive with color.

Autism “Spectrum”, indeed.

Breaking in the New Boss (Part 2)

I’m so glad I have therapy again this week. Two weeks ago, I talked to Dr. L and explained what had happened with my new manager. She said I was right to let the first instance go and to give him a month before worrying about the micromanaging because that was probably just his way of learning the ropes. I said I would.


Then today he wanted to meet with me about what I do. I went in with an open mind and a desire to be accommodating as possible. Regardless of my first impression, he’s my boss and life will be easier if we get along.

First he scolded me for not answering the phones enough, though I was told before (by previous managers) that I shouldn’t have to answer them because it isn’t my job. I still help with them, but I don’t answer every call.

Next we went over the list I had made, a loose summary of my day to day job. I am busy all day nearly every day. There are times of the year when business is slow for other people I work with, but not for me. I’m busy year round. I even work from home, off the clock if I have to. Yet there he was, smug as can be, telling me “it’s not 40 hours worth of work.” He’s going to give me more to do.

Then came the final straw. He may be taking away my office and putting me out on the floor with everyone else. The noisy, chaotic floor that makes my head spin and my heart race. Where I can’t focus enough to carry on a conversation, let alone be productive.

I tried to explain why this won’t work. (You’d think that the fact that I had to get up and close his office door just so I could understand what he was saying to me would have been an adequate demonstration) He said “the company is committed to following ADA guidelines” and then added “if we can.” Then he launched into how he used to work in a really chaotic environment and he learned to just push through it. I said “Yeah, it’s great that normal people can do that. I’m not wired that way.” I know “normal” is the wrong word, but I was too upset to express myself properly.

Anyway, he also gave me a hard time about not being social enough with my co-workers….after I started crying (yes, crying…I’m so embarrassed) about not being able to function the way other people do in an environment that overloads my senses. I’m going to ask Dr. L to write a letter, but I’m so scared right now. I don’t want to lose my job because I’m forced into a situation where I can’t function.

Breaking in the New Boss

My new manager finally arrived on Monday and I’m not a happy panda. I’m not always great at reading people, but my first impressions are usually spot on. My first impression of the new guy? Fake, creepy and desperate to climb the corporate ladder. It only gets worse from there.


When he came in to learn what exactly I do here, I decided to give him the basic “here’s what’s weird about me” speech so he’d know that I’m not your typical social-joiner, ass-kissing corporate drone. I explained my RA and how it means I have to go to the doctor a lot. I told him about my standing Thursday afternoon therapy appointment. Then I hit him with the Asperger’s bomb.

Most people fall into four categories. Either they have no idea what Asperger’s is so they just change the subject, they have no idea what it is and politely ask for a definition, they have an idea of what it is, but it makes them uncomfortable so they change the subject or they get it and are totally cool about it. New guy gets his own brand new category. I’ll call it “Knows enough about Asperger’s to know what buttons NOT to push and pushes them immediately because he thinks he’s funny, thereby making me super uncomfortable.”

This genius literally said, “Oh, so I guess I shouldn’t get too close then?” and made a move like he was going to lunge at me. Naturally, I backed away (I don’t like strangers in my personal space…hell, I barely like having people I know in my personal space) so he did it AGAIN. I was floored. I know, in retrospect, that I should have told him that was unacceptable and qualified as harassment. At the same time, who wants to accuse their brand new boss of harassment on his first day?  I spent the next hour trying to get work done while rocking in my chair.

I’ve had bosses I didn’t like before. This is a whole new level of ick, though. Guh. I have a therapy appointment tomorrow. Hopefully she can give me some guidance. This is a first for me.

Things You Should Know

You should know I’m not stuck up. I have overwhelming social anxiety that makes it difficult for me to be around people and I don’t know how to make small talk. A simple, “Hi, how are you,” can cause me enormous stress if I’m not ready for it.


You should know that my mood swings don’t mean I’m crazy. I just have a lower melting point than most people. It takes very little to overwhelm me. My arthritis makes it worse. Being tired and in pain on top of all the other sensory attacks makes me even more vulnerable.

You should know that it isn’t personal when I turn down your invitations to socialize. It’s not that I don’t like you; I just don’t have the capacity to function in the typical “Hey, let’s catch up over drinks,” situation. Parties are even harder to deal with. Just know that you can always talk to me online. I’m more comfortable in cyberspace than I am in the “real world”.

You should know that simply trying harder won’t change anything. It doesn’t matter how much I want to be cool and friendly and popular, because those things aren’t me. I’m learning to like myself the way I am, quirks and all.

You should know that I care about whatever you may be going through. I don’t always have the words to express it and I may even seem to pull away from you when you’re suffering. Sometimes the empathy I feel for you becomes more than I can handle and I withdraw into myself. When you hurt, I hurt and sometimes it’s too much for me.

You should know that I’m just like you. I want to be loved and I want to be happy. I want to enjoy my life and to be accepted as I am. Most of all, I want to be understood.

Guilty Pleasures

I’ve been thinking a lot this week about “guilty pleasures.” The term makes less sense the more I think about it. Unless it’s illegal or is hurting anyone (animals included, of course), why should you feel guilty about something you enjoy? And why should anyone have the right to make you feel embarrassed about it?


So you collect potato chips shaped like characters from The Wizard of Oz, like the way peanut butter feels between your toes and think the Twilight movies are the greatest example of American cinema since Citizen Kane…that’s your right. You’re not hurting anyone. If someone catches you dancing to the greatest hits of Milli Vanilli, are you going to turn red and tell them it’s a guilty pleasure? No. It’s a pleasure, plain and simple. There’s no reason to feel guilty about it.

If you’re on the other end of the exchange, shut up. You don’t have to like Milli Vanilli, but you do have to keep yourself from being an ignorant asshole that makes fun of their own friends. It’s one thing to politely express an opinion. It’s another thing entirely to be a dick about it.

Let’s recap, shall we? Serial killer who murders homeless people because it’s fun = guilty pleasure. Cartoons and crayons after puberty = pleasure, no guilt. Be it a brain, an athlete, a basketcase or a princess (but not a criminal), just be you and be proud.

Filler

I don't have anything clever to say and I have to go to bed because I have to work in the morning.  

Instead of a proper post, here's Henry Cavill in leather pants.

Ninja Gets Bullied

Bullying has been a hot topic lately, as the consequences of leaving it unchecked come to light more and more. It’s a subject that I have a personal interest in, as a victim of bullying when I was younger. The worst of it came from an older girl on the school bus when I was in junior high. At the urging of Dr. L, I located and reached out to her online. I made my peace and forgave her. We’ve conversed some and she is, from what I’ve seen, very different from the girl I remember. She’s kind and considerate. I’m grateful for the chance to move on.


Then came the new that Ninja (my nephew and fellow Aspie) was being bullied. By an older girl. On the school bus. In junior high. Here we go again.

Understand that this is not the type of boy to hit back and, even if he was, he’s not going to hit a girl. Not even a girl who is older than him and is verbally and physically attacking him. I can’t even put into words how angry I am. The whole family is furious, but I’m taking this personally. I hate that this poor kid, who is so much like me, is going through the same thing I went through at his age.

I love the “It gets better” project and I believe it can get better, but only if something is done about it. If parents and teachers and EVERYONE ELSE can’t step up and tell kids that bullying is not acceptable, things will never change. Not only do we need to pass that message on, but we also need to make sure everyone understands what bullying is.

You don’t have to be physically hurt to be bullied. You don’t have to be slandered online. A bully can be anyone…a friend, a relative, a teacher. Just because someone follows up a cruel joke at your expense with, “I’m only kidding. You’re too sensitive.” doesn't mean what they did wasn’t bullying. Sure, we can all pick on each other from time to time but, when it hurts, it’s bullying.

It has to stop now. Enough is enough. It won’t get better on its own. We have to make it better.

World Mental Health Day

Dr. L (my therapist) said there’d be days like this. I’m careening rapidly toward a major meltdown. I didn’t sleep well, I have a headache, we’re short-staffed, I forgot to refill my Prozac and the phones will. not. stop. ringing.


Naturally, this makes it the perfect time to talk about World Mental Health Day. I’m grateful to live in a country where people are encouraged to seek help and that my insurance covers most of my care. I can see a therapist every two weeks and generic Prozac is fairly inexpensive.

Yes, my insurance company makes me jump through hoops to get the care I need and I can’t go as often as I’d like, but I’ve got it pretty good. Things could be much, much worse for me and I’m gateful for what I have.

New People (EEK!) Part 2 and an Anniversary of Loss

I stressed all week about being faced with new people.  I knew, being the driver, that I wouldn't be able to even have a drink or two to loosen up.  When the ceremony ended, I think I looked pretty calm on the outside, but that's when the panic really set in.  I think my exact thoughts were, "Shit shit shit shit shit shit shit shit shit..."  Turned out that I didn't need to freak out at all.

The wedding was perfect.  My friends looked more in love than I have ever seen them look.  My table at the reception was the Chicks, one acquaintance (a sweetheart I had only met once or twice), her husband and son and two women I hadn't met before.  The Chicks sat on either side of me as a buffer, but it turned out it wasn't needed.  We were all friends by the end of the night, even piling (all 6 of us women) into the photo booth at one point, with an open umbrella.  I've never felt more at ease and I know I owe it to my girls' sensitivity to my issues and the bride and groom's desire to put us at a table where we would be comfortable -- table 4 was the PLACE TO BE.  I can't remember the last time I enjoyed a party at all, let alone as much as I did last night.  Congrats again to Cap'n Emo and Private Crumb on starting a new life together!

On the other end of the life event spectrum, today is the 1st anniversary of the day my sweet friend Chris lost her battle with cancer.  She was like no one I've ever known and I can't help but wonder if she wasn't an undiagnosed Aspie, herself.  Regardless, she was someone that everyone loved, even if they didn't like her.  A year out, and her Facebook page is STILL more active than mine.  Just because she's not physically here, doesn't mean she stops being our friend.  I'm grateful to have known her and, now that I'm older, I wish I could be more like her.

iSad

Steve Jobs is gone. I’ve never been a full Apple convert…I love my iPod and want an iPhone, but I also love my PC. Regardless of my position on Apple products, my heart aches for his family and for the tech world. I’m a total gadget nerd. New innovations excite me to no end and Jobs was an innovator like no other. Last night on Twitter, someone called him “our Edison”. I couldn’t agree more, though he was not the “Wizard of Menlo Park” but the “Pirate of Silicon Valley”.

For those of us who struggle with being different and those of us who are proud to be unique, Steve Jobs was a role model. Sure, he was aggressive and temperamental, but he said what was on his mind. He turned a box of wires and chips into art and made it possible for people to carry their entire music libraries in their pockets. The futuristic tech we dreamed of as kids exists because of people like him.

He was a highly quotable man and he delivered a moving commencement address at Stanford in 2005. I wanted to post this here, more for myself than anyone else. His advice is exactly what I need to remember every day.

June 12, 2005


I am honored to be with you today at your commencement from one of the finest universities in the world. I never graduated from college. Truth be told, this is the closest I’ve ever gotten to a college graduation. Today I want to tell you three stories from my life. That’s it. No big deal. Just three stories.


The first story is about connecting the dots.


I dropped out of Reed College after the first 6 months, but then stayed around as a drop-in for another 18 months or so before I really quit. So why did I drop out?


It started before I was born. My biological mother was a young, unwed college graduate student, and she decided to put me up for adoption. She felt very strongly that I should be adopted by college graduates, so everything was all set for me to be adopted at birth by a lawyer and his wife. Except that when I popped out they decided at the last minute that they really wanted a girl. So my parents, who were on a waiting list, got a call in the middle of the night asking: “We have an unexpected baby boy; do you want him?” They said: “Of course.” My biological mother later found out that my mother had never graduated from college and that my father had never graduated from high school. She refused to sign the final adoption papers. She only relented a few months later when my parents promised that I would someday go to college.


And 17 years later I did go to college. But I naively chose a college that was almost as expensive as Stanford, and all of my working-class parents’ savings were being spent on my college tuition. After six months, I couldn’t see the value in it. I had no idea what I wanted to do with my life and no idea how college was going to help me figure it out. And here I was spending all of the money my parents had saved their entire life. So I decided to drop out and trust that it would all work out OK. It was pretty scary at the time, but looking back it was one of the best decisions I ever made. The minute I dropped out I could stop taking the required classes that didn’t interest me, and begin dropping in on the ones that looked interesting.


It wasn’t all romantic. I didn’t have a dorm room, so I slept on the floor in friends’ rooms, I returned coke bottles for the 5¢ deposits to buy food with, and I would walk the 7 miles across town every Sunday night to get one good meal a week at the Hare Krishna temple. I loved it. And much of what I stumbled into by following my curiosity and intuition turned out to be priceless later on. Let me give you one example:


Reed College at that time offered perhaps the best calligraphy instruction in the country. Throughout the campus every poster, every label on every drawer, was beautifully hand calligraphed. Because I had dropped out and didn’t have to take the normal classes, I decided to take a calligraphy class to learn how to do this. I learned about serif and san serif typefaces, about varying the amount of space between different letter combinations, about what makes great typography great. It was beautiful, historical, artistically subtle in a way that science can’t capture, and I found it fascinating.


None of this had even a hope of any practical application in my life. But ten years later, when we were designing the first Macintosh computer, it all came back to me. And we designed it all into the Mac. It was the first computer with beautiful typography. If I had never dropped in on that single course in college, the Mac would have never had multiple typefaces or proportionally spaced fonts. And since Windows just copied the Mac, its likely that no personal computer would have them. If I had never dropped out, I would have never dropped in on this calligraphy class, and personal computers might not have the wonderful typography that they do. Of course it was impossible to connect the dots looking forward when I was in college. But it was very, very clear looking backwards ten years later.


Again, you can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something - your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.


My second story is about love and loss.


I was lucky – I found what I loved to do early in life. Woz and I started Apple in my parents garage when I was 20. We worked hard, and in 10 years Apple had grown from just the two of us in a garage into a $2 billion company with over 4000 employees. We had just released our finest creation - the Macintosh - a year earlier, and I had just turned 30. And then I got fired. How can you get fired from a company you started? Well, as Apple grew we hired someone who I thought was very talented to run the company with me, and for the first year or so things went well. But then our visions of the future began to diverge and eventually we had a falling out. When we did, our Board of Directors sided with him. So at 30 I was out. And very publicly out. What had been the focus of my entire adult life was gone, and it was devastating.


I really didn’t know what to do for a few months. I felt that I had let the previous generation of entrepreneurs down - that I had dropped the baton as it was being passed to me. I met with David Packard and Bob Noyce and tried to apologize for screwing up so badly. I was a very public failure, and I even thought about running away from the valley. But something slowly began to dawn on me – I still loved what I did. The turn of events at Apple had not changed that one bit. I had been rejected, but I was still in love. And so I decided to start over.


I didn’t see it then, but it turned out that getting fired from Apple was the best thing that could have ever happened to me. The heaviness of being successful was replaced by the lightness of being a beginner again, less sure about everything. It freed me to enter one of the most creative periods of my life.


During the next five years, I started a company named NeXT, another company named Pixar, and fell in love with an amazing woman who would become my wife. Pixar went on to create the worlds first computer animated feature film, Toy Story, and is now the most successful animation studio in the world. In a remarkable turn of events, Apple bought NeXT, I retuned to Apple, and the technology we developed at NeXT is at the heart of Apple’s current renaissance. And Laurene and I have a wonderful family together.


I’m pretty sure none of this would have happened if I hadn’t been fired from Apple. It was awful tasting medicine, but I guess the patient needed it. Sometimes life hits you in the head with a brick. Don’t lose faith. I’m convinced that the only thing that kept me going was that I loved what I did. You’ve got to find what you love. And that is as true for your work as it is for your lovers. Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle. As with all matters of the heart, you’ll know when you find it. And, like any great relationship, it just gets better and better as the years roll on. So keep looking until you find it. Don’t settle.


My third story is about death.


When I was 17, I read a quote that went something like: “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.


Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything – all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.


About a year ago I was diagnosed with cancer. I had a scan at 7:30 in the morning, and it clearly showed a tumor on my pancreas. I didn’t even know what a pancreas was. The doctors told me this was almost certainly a type of cancer that is incurable, and that I should expect to live no longer than three to six months. My doctor advised me to go home and get my affairs in order, which is doctor’s code for prepare to die. It means to try to tell your kids everything you thought you’d have the next 10 years to tell them in just a few months. It means to make sure everything is buttoned up so that it will be as easy as possible for your family. It means to say your goodbyes.


I lived with that diagnosis all day. Later that evening I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and I’m fine now.


This was the closest I’ve been to facing death, and I hope its the closest I get for a few more decades. Having lived through it, I can now say this to you with a bit more certainty than when death was a useful but purely intellectual concept:


No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.


Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma - which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.


When I was young, there was an amazing publication called The Whole Earth Catalog, which was one of the bibles of my generation. It was created by a fellow named Stewart Brand not far from here in Menlo Park, and he brought it to life with his poetic touch. This was in the late 1960’s, before personal computers and desktop publishing, so it was all made with typewriters, scissors, and polaroid cameras. It was sort of like Google in paperback form, 35 years before Google came along: it was idealistic, and overflowing with neat tools and great notions.


Stewart and his team put out several issues of The Whole Earth Catalog, and then when it had run its course, they put out a final issue. It was the mid-1970s, and I was your age. On the back cover of their final issue was a photograph of an early morning country road, the kind you might find yourself hitchhiking on if you were so adventurous. Beneath it were the words: “Stay Hungry. Stay Foolish.” It was their farewell message as they signed off. Stay Hungry. Stay Foolish. And I have always wished that for myself. And now, as you graduate to begin anew, I wish that for you.


Stay Hungry. Stay Foolish.


Thank you all very much.

New People (EEK!)

I do not adapt well. I know this. I hate change. Unfortunately, this makes my job an endless source of stress for me. In the ten years that I have worked here, the manager has changed SEVEN times. Three of those changes have happened in 2011. Three times in ten months, I’ve had to explain what Asperger’s is and why I have to have my office door closed and my iPod on to get things done. I’ve had to get used to a new person’s voice and habits. I’ve had to get them used to my therapy schedule. Having an RA flare-up, I’ve also had to explain that, while also dealing with the changes in my routine that come with a flare-up.

For my NT friends and family, meeting new people is normal, even exciting sometimes. For me, it’s terrifying. The desire to fit in and do the “right” things is overwhelming, as is the fear that everyone is looking at me and judging. The idea of embracing who I am and not trying to conform to what I think people expect is still new to me. One day, maybe I’ll be comfortable. For now, encountering new people is traumatic for me.

There’s also the issue of social situations. I avoid them at all costs unless I’m going to know 90% of the people there and I know it won’t be too chaotic. This Saturday, two of my friends are getting married (Yay! Congrats to Captain Emo and Private Crumb!) which means getting dressed up, driving to an unfamiliar place and being surrounded by strangers. Normally not my scene, but I’ll make an exception for such a special occasion. I’m going to talk to my therapist tomorrow to see what kind of tips she can offer for getting through the reception without stressing myself out.

Back to the topic of embracing who I am or, as I call it, embracing my weirdness. I think I need to make more of an effort to just be myself…or rather, less effort being someone I’m not. I’m unusual. That’s not a bad thing. All right, enough navel gazing for now. I’ve got Letters To Cleo playing on my iPod, a stack of work orders to process and toilets (yes, toilets) to order. Oh, the glamour.

Glee and Asperger's Syndrome

Below is a copy of a letter I wrote to Fox and posted on Glee's official Facebook page:

For two seasons, I have watched and loved every episode of Glee.  I love that a show can embrace every difference and disability with kindness and humor.  It makes me nostalgic for my own show choir days and the only time in my life that I ever felt I belonged somewhere.  You see, I have Asperger’s Syndrome and fitting in is next to impossible.

Imagine my joy when a character who represents my place on the Autism spectrum was introduced and presented with the same kindness and humor as all the other characters…or rather then joy I might have felt if that had actually happened.  Instead, enter Sugar Motta, the “bitch with a twist.”  Maybe you thought throwing in “self-diagnosed” would make it all right.  It didn’t.

I am a 35 year old woman with Asperger’s Syndrome.  I was only diagnosed last December.  You see, it’s much harder to diagnose Aspie females because we learn social coping methods more readily than our male counterparts.  For those of us who grew up in a time when Asperger’s was not widely known, we stumbled through our childhoods and wondered why we never grew out of our “awkward phases”.  As adults, finding an autism literate therapist is harder than you might think.  Asperger’s is largely misunderstood, even by the so-called experts.

Because of all this, many Aspies are self-diagnosed.  They seek answers to why they feel so different from everyone else and eventually realize the truth – that they, like me, are Autistic.  They are not looking for an excuse to be “bitches”.  They are looking for acceptance.  We recognize our own and do not discriminate simply because someone does not have an “official” diagnosis.  Are there people who claim the Aspie label so they can get away with bad behavior?  Yes.  But not nearly as many as you might think.

Unfortunately, because of characters like Sugar, myself and Autistic people like me are accused of making it all up.  We battle discrimination and misunderstanding on all fronts…even within our own community.  There is a lot of bad information around, leading to misconceptions about why we are the way we are.  Good writers research the characters they create and it’s clear that someone did not do their homework.

You can make this right.  Learn the truth about us and portray us correctly.  Start here:

http://autismandempathy.com/

http://www.journeyswithautism.com/

http://defeatingthedoginthedaytime.blogspot.com/

http://mybrainyourbrain.wordpress.com/

http://thoughtyautie.wordpress.com/

http://aspergirlmaybe.wordpress.com/

http://jerobison.blogspot.com/

http://nostereotypeshere.blogspot.com/

http://femmeburger.blogspot.com/

http://autism-fallingintoplace.blogspot.com/

We are Autistic.  We are Aspies.  We deserve to be heard.

9/11 Reactions From an Aspie

With the 10th anniversary of the 9/11 attacks approaching, there is little one can do to avoid the onslaught of stories, new and old, from survivors and witnesses. With empathy, as it relates to Autism, being on my mind lately, I can’t help but look at what happened that day and in the years that followed and wonder how anyone could think that people like me are incapable of empathy.


Like most people, I remember vividly where I was that morning. At the time, I shared an office with another employee, who insisted on listening to a radio station I hated. The morning show was particularly annoying to me and I did my best to tune it out. For some reason though, on that morning, I was the one who heard the words “fire” and “World Trade Center” and turned up the radio.

The news was sketchy at the start of it all. First we heard it was a fire that had broken out. Then that a “small plane” had hit the north tower. Then that it was a commercial plane that had crashed by accident. We turned on the news in the conference room. Then the south tower was hit and, with it, came the realization that this was no accident. We were under attack.

Soon the news came in about the Pentagon and flight 93 in Pennsylvania. We watched in silence as the south tower collapsed. I think I was the first to speak, though I can’t be sure. My own voice sounded foreign to me as I said, “Oh my God. There’s no way they got everyone out in time.” I don’t remember saying anything else.

Once the north tower collapsed, the news was all words and pictures of the devastation. I couldn’t watch any longer. The images of fire and smoke and ash and the tear-streaked faces of witnesses were too much for me. I felt the overwhelming need to make myself useful, so I fixed a toilet in the ladies room that hadn’t been working.

The rest of the day was a blur. My office is on Walt Disney World property and there was fear that Disney might be a target. We stayed open, but business came to a halt. No one was calling or coming in. They were, like us, glued to the news reports. I wanted to go home.

I went to my mother’s house that night. We ate ice cream and watched the President’s address. I bought two new pairs of shoes that weekend. I moved out of my apartment and lost my job a month later. By Christmas I was still unemployed. In January, I was rehired. I moved again in March. In November, my niece was born and my mother got engaged. Life went on.

Now, ten years later, I still cry reading the stories of the victims and survivors, the heroes who sacrificed themselves, the search dogs who kept looking despite their exhaustion, the children who lost their parents and the parents who lost their children. I find myself full of sadness, pride and wonder when I think of Todd Beamer and the words, “Let’s roll.” Though I know no one who died that day, I grieve.

I also struggle with anger towards people who insist that, because of a few extremists, all Muslim people must be violent and bent on the destruction of all other cultures and religions. This is no truer than saying all Roman Catholics want to kill Muslims, Greek Orthodox Christians and Pagans because of what happened in The Crusades or that all Fundamentalist Christians want to bomb abortion clinics because people like David Leach tell them to. I despise people who refuse to look at an individual person’s actions, but instead lump them all into a group.

We on the spectrum are often misunderstood in this way. We may not express ourselves in a way that is perceived as “normal”, but this does not mean that we don’t feel. When you’re watching the 9/11 memorial dedication this weekend, know that I’m watching too and that my heart aches for the lives lost just like yours.

An Aspie With Auto-Immune Disease

I have good sensory days and bad sensory days and in-between sensory days. Sometimes the slightest noise makes me want to scream and kick the walls of my office. Other times I can cope with whatever endless nonsense seeps in around the cracks in my door.


I have lived with Rheumatoid Arthritis since May of 2005. Through the diagnostic process, I had to face many of my fears. Talking to new people, as I was meeting new doctors and nurses and lab techs regularly, was not something I could avoid. I am single and at the time lived too far from my family to ask anyone to act as an advocate for me. My fear of needles was challenged, as I was having blood drawn a minimum of once a week and eventually had to learn to give myself injections. My fear of changes to my routine shook me more than any other. My routines keep me calm and suddenly I was helpless. There were days when I had to call in sick to work because I couldn’t get out of bed. I had to cut my long hair, because I could no longer lift my arms long enough to wash it properly and was unable to grip a hairbrush. I gained 50 pounds in 6 months because of the many medications I was taking and because I was suddenly forced into a sedentary lifestyle. There was a great deal of change in a very short time.

When the pain was at its worst, I was irritable and most people understood. Being unable to walk or hold a pencil without excruciating pain could upset anyone. When the medications began doing their job and the pain lessened, I still had trouble with sensory invasions, as I always had. It was just different now. Even on a relatively pain free day there were things that I had to cope with, like feeling sick from the drugs or being upset about my hair falling out.

For the past year, I have been in remission. Though my doctor never said the word “remission”, I was symptom free and off all medications, thanks to a careful regimen of vitamins. I had begun making an effort to be active again. In the middle of this wonderful year, I received my Asperger’s diagnosis. I began to feel “normal” for the first time in as long as I could remember.

A few weeks ago, I flare up hit me like a freight train. It all came back – the pain, the exhaustion, the depression, the helplessness – and I was PISSED. I hated having to agree to go back on the very medications which had made me miserable while saving me from further damage to my joints. But here’s something new…

Like every other part of my life, I have to look at this through my new “down the rabbit hole” perspective. I am in pain ALL the time. I take Prednisone, which makes me have bizarre food cravings, out of control hunger pangs and muscle spasms. I take Methotrexate, which makes me want to sleep for days and at times has made me violently ill. I take Mobic, which makes me sleepy and hyper at the same time. How can I deal with sensory overload when I can’t shut it out? How do I cope when the attacks on my senses are coming from within my own body?

This entire saga is playing out with frustrating familiarity, but I also find it fascinating. I can now look back on how I felt six years ago and understand why my mental response to the experience seemed so different from other people I spoke with who had also learned to live with RA.

The medication is beginning to help and I haven’t lost hope. I got my disease under control once and I’ll do it again. Fingers crossed (metaphorically, because…OUCH!) that it will happen sooner rather than later. Quite frankly, this sucks.

Autism, Empathy and “Reality” TV

For the life of me, I can’t understand the point of most so-called reality shows. Some of them, sure. I like So You Think You Can Dance. I used to like American Idol, before it became the same tired shit over and over again. What I hate and can’t wrap my mind around are the shows that seem to be all about people being awful to each other. You’ve got all the backstabbing and game playing on shows like The Bachelor and Survivor, which I can’t stand, but at least there’s an endgame. Those make a little bit of sense to me.


And then there are the others. Bad Girls Club, Jersey Shore, Real World, Real Housewives, Bridezillas, Toddlers and Tiaras, Dance Moms – the list goes on and on. When I watch these shows, I get so worked up and upset and I have never understood why I am so bothered by something that other people find entertaining. Upon learning about my place on the spectrum and the supposed lack of empathy the “experts” said I should feel, I was even more confused.

Guess what? I feel empathy. I feel it so strongly that it is overwhelming. The experts are wrong. (I’m not the only one who feels this way…visit www.autismandempathy.com to read about others like me.) Because of this, watching a television show that is driven by the fact that people can be completely evil to one another is painful for me. It hurts me. I’d much rather watch something like Extreme Makeover: Home Edition or My Fair Wedding. Show me people being kind. Show me there is good in the world. Show me that the human race isn’t doomed to destroy itself. Show me hope. Show me love.

On Awareness and the Bliss of Ignorance

I have never been popular. When I was younger, I thought it was my religion, hobbies and intelligence people disliked. Now, as an adult, I recognize that I was an obnoxious little zealot, a weirdo and an insufferable know-it-all. Am I still unpopular? Yes. Am I still obnoxious, weird and pedantic? Sadly, yes. But now I understand why.

I am no longer religious, but growing up I was a self-righteous Bible thumper intent on “saving” everyone. Looking back, I see how I sought to find my place in the church. I was lonely and not well-liked, so I thought church was a safe haven. Surely the bullying I experienced at school would never happen with “Christians”. Poor little me. If only I could go back and warn my younger self that the bullying would be WORSE in church, I could have saved myself a lot of abuse.

Regardless of the bullying, I did my best to fit in and be the best little soldier for God I could be. But fitting in was not something I knew how to do. I tried to conform and be what I thought was expected of me. I preached at my schoolmates about Heaven and Hell and Salvation and Sin and all the other things they NEEDED to know. When reality set in and I saw the hypocrisy and hate flowing out of the church, I was repelled by it. When logic took over and I saw the flaws in “the word”, I saw the flaws in myself. To be honest, the only thing keeping me from fully embracing Atheism is a heavy dose of fundamentalist fear, hammered into my brain at an early age by Sunday school teachers and camp counselors.

As for my nit-picking, know-it-all ways, I apologize. I don’t mean to be rude. I like facts and I like them to be correct. When I hear an incorrect fact, it is nearly impossible for me to keep my mouth shut. I’m better about it than I used to be. There was a time when you could have created a drinking game based on the frequency with which I started sentences with “actually”.

These days I try to refrain. Sometimes I slip and blurt out a correction. Sometimes I feel it would be wrong of me not to. Really, if you’re walking around saying that the sky is green, I’d rather you be annoyed when I tell you in private as politely as I can (and please understand that politeness is challenging for Aspies) that it is blue, rather than wait for you to tell the wrong person about the green sky and have them embarrass you publicly.

I’m still a weirdo. I’m okay with it. I’ve embraced my weirdness. I watch cartoons. I have unusual taste in music. I don’t care about fashion. I enjoy spending time alone. I haven’t had a date in…well…let’s just say it’s been a while. I don’t make friends easily. I don’t know how to act with new people. I have a hard time dealing with social situations. I never understood these things when I was younger. I was different and I didn’t know why. Now I do. I’m Autistic. I’m an Aspie. I’m me. Ignorance is not so blissful, after all.

Pain and Unwinnable Battles

There are so many kinds of pain.  There’s physical pain, emotional pain, pain that comes from love and loss and dreams that were never meant to be.  There are broken bones, broken hearts, broken promises…there’s pain you think you’ll never forget and pain that never goes away and pain that you wonder where it came from in the first place.

The bully who tormented me in Junior high.  The busted knee from slipping on a wet bridge.  The stupid break-up that seemed like the world was ending.  The time I face-planted into a marble windowsill.  The day I realized the man I loved would never love me.  The pain of an auto-immune disease that may eventually cripple me and will almost definitely kill me by age 60.  The days I found out my friends had died.  The broken finger and broken toes I got being stupid.  The friendship destroyed over rumors.

And now there’s this new pain.  Not new, exactly.  It’s always been there.  That feeling, knowing I’ll never be the person I dreamed of becoming.  That I’ll never fit in.  That parties and crowds will always make me miserable.  That I’m still single because I don’t know how to act with people.  That I’m forgettable because I hide in the shadows.

It’s not really new.  It just has a name.  I thought being able to call it what it is would make things better.  In some ways it has.  Many people are more gentle with me and understanding about my social fears.  I can’t say enough how grateful I am for them.  Some just ignore it and continue giving me a hard time about not being social enough.  I can handle that.  What I can’t take is being called a liar.

Once upon a time, I told my father I thought I had an eating disorder.  He proceeded to tell me I was making it all up to add drama to my life.  Years later, diagnosis in hand, I still feel those words like a punch in the gut.  Here I am again, Asperger’s diagnosis in hand, and I’m still being called a liar.  Not by my father this time…we don’t talk anymore, thank God.  This time it’s a co-worker.  I shouldn't care, but I do.

I know I don’t fit in at work.  I don’t fit in anywhere.  I expect to be on the edge of things and it’s worse at work because I’m the only woman in an industry that seems to live by the “You don’t have a penis so you must be an idiot” philosophy.  I take a lot of disrespect.  I suck it up and deal with it.

So here I go again, pounding my head against the wall.  One of the only people I thought I could talk to made me feel so small.  It came out of left field and it hurt.  He made a crack about how I don’t come out of my office.  I laughed it off.  No, I don’t come out of my office.  I’ve explained to him before why I stay in there and I thought he understood.  I was wrong.

He wouldn‘t even let me defend myself.  Every time I opened my mouth to speak, he cut me off.  “Why are you always in there with your door closed?” turned into, “You’re stuck up,” and “You’re just making excuses,” and “You could be social if you really wanted to.”  I gave up and left.  I don’t have it in me to keep fighting battles I can’t win.

3...2...1...Meltdown...

Let's do a little math exercise:


Sinuses full of gunk.
+
Door with "Keep Door Closed" sign propped open.
+
Indoor humidity (thanks to open door) leaving everything damp and sticky.
+
Rude person on the other end of the phone.
+
Loud male coworker singing Katy Perry's "Firework" at the top of his lungs.
+
Filthy work gloves on the floor, indicating that a man has been using the LADIES room.
+
Fruit flies buzzing around...that open door again.
+
Heavy equipment being used outside that is making the walls shake.
+
Less than restful sleep last night.
=
Meltdown imminent. 

I advise everyone to take cover.

Neglect and Being a Disappointment

 First, apologies for neglecting my blog.  I've been kind of nuts over my latest Asperger's fueled obsession: C25K.  Trying hard to build up my stamina (and pare down my fat ass) with the goal of eventually running a 5K.  It's exciting and terrifying.  I'm using a very cool iPhone/iPod Touch app that guides you though the program, while letting you make playlists of your own music.  The "coach" gives you cues to walk or run (or in my case, walk slightly faster) and lets you know when you are halfway done.  I think I might be better motivated if the cue was something along the lines of "Oh my god, he's behind you!  And he has a machete!  Run!"


I have had a few mornings where I've gotten up at 5AM to walk, which I never expected to like.  I am not a morning person.  Surprise, surprise...I loved it.  There is no one up and about in my neighborhood at that time of day.  It's like I own the morning.  I don't have to look strangers in the eye and give them a polite greeting.  I don't have to feel self-conscious about the way I look.  I don't have to deal with any external stimuli, except for the weather and the bugs.  Starting my day like that helps me find my anchoring point for the day.  I can go to work after that and feel ten times more focused and calm.  Sure, it means going to bed at 9PM, but it's worth it to me.  That time of day is Aspie heaven.

Now to the main event -- being a disappointment.  I have said for years that I am the family screw up.  Though I have been told by my family that this is not the case, I disagree.  My mother and sister are responsible adults who get things done, while I struggle to keep my priorities in order.  Give me a task and I will probably fuck it up in some way, even with written instructions.  While it's a relief to know that my screwed up way of doing things is Asperger's related, it is important to add that I do not think I deserve a free pass.  Asperger's is an explanation, not an excuse.

In Kindergarten, I forged my mother's signature to try to get out of doing assignments.  A little older, I decided I couldn't eat bologna sandwiches anymore.  So I hid them in my closet.

When I took Home Ec, we had an assignment to cook a meal for our families.  Recipe and ingredients in hand, I set about making one of my favorite dishes.  I missed a step and everyone ended up eating bone dry chicken casserole.  It's become a running joke what a horrible child I was, but I'm no better as an adult.

When I was (and I've never told anyone about this) about 20, I got pulled over for a burnt out headlight.  It's a gimme ticket.  You get the light fixed, you go to the courthouse, you show them it's fixed and you pay a $4.00 fine.  What did I do?  I got the headlight fixed, forgot about the courthouse, went on my merry way and got a notice in the mail some months later that my driver's license had been suspended.

I won't go into detail about my latest screw up.  Suffice it to say that I, once again, incorrectly perceived a task as "not a big deal" when, in fact, it is a very big deal.  I had already settled on a date to take care of it, but that is beside the point because it's something I should have done two years ago.  No question of guilt, no excuses, just me screwing up.  Again.

I'm responsible for paying the utility bills where I live and the power has been shut off three times.  Granted, not within the last three years, but it was my responsibility and I failed.

I spent the afternoon yesterday in some pretty intense mental self-flagellation.  I am a disappointment.  Maybe not to anyone else, but to me.  I hate that I do this stuff and I hate that I never seem to learn.  More importantly, I usually make it worse by saying the absolute wrong thing when trying to apologize.  It seems so simple.  Receive a task, do it, move on.  It should be easy.  In a world of amazing technological advancements, most of the things I screw up are completely inexcusable.  All I can do is try harder.  I don't want to be the family screw up anymore.

Sensory Deja Vu

I’ve spent a lot of time lately thinking about all the negative ways being hypersensitive to sounds, sights, textures, tastes and smells affect me. That really isn’t fair. There are so many good things I can associate with my senses that haven’t been getting enough attention lately.

Smells, especially, have such a powerful ability to awake emotions and memories in me. The smell of donuts and coffee reminds me of the Sunday morning drive to church. Roasted turkey legs (the big ass ones they sell at theme parks) remind me of my first Halloween Horror Nights when I worked at Universal. Cool Water cologne reminds me of my show choir days in high school. Sheep shit (yes, I said sheep shit – it smells like old cheese) reminds me of climbing all over castle ruins in Wales. There’s a certain brand of hairspray that reminds me of being in Rome. Orange blossoms make me feel relaxed. Jasmine makes me feel flirty. Amarige by Givenchy makes me feel more attractive. Vanilla makes me feel content.

It’s the same with all my senses. Hearing a certain song can instantly transport me to a particular place and time in my life, down to a specific moment. Live For Loving You by Gloria Estefan takes me back to standing in line for the ferry at the Magic Kingdom my Junior year of high school. Lean On Me takes me to a lipsync contest at church camp. Lady Marmalade reminds me of driving my first car, listening to a mix tape my best friend made me when I moved away.

I hate that there are things that can attack my senses and send me into a tailspin, but I refuse to see my sensitivity to them as a curse. If not for my amped up senses, I wouldn’t have the powerful connection I have with the good feelings and memories that they can provide. You have to take the bad with the good.

Now pardon me while I crank up some Oingo Boingo and duct tape this scented candle to my face.

On Weight and Fear of Intimacy

Now this is the kind of marriage that would work or me.

This might be the hardest thing for me to write because it is full of thoughts that I don’t like to admit exist. The subject came up in therapy last week when we finally connected my binge disorder to my Asperger’s. Deep down, I’ve always known that my binging was about padding myself with fat to keep people away. I just never knew why.

My nature is to be attracted to men who I know, at least on a subconscious level, will never want me. Either they’re gay or in a serious relationship or maybe I’m just not their type – ultimately, I know nothing will ever come of it. I don’t make friends easily. I don’t like small talk. Actually, I loathe small talk. I simply don’t do well with people.

As with many visible disabilities, obesity has the effect of causing people to look away because they don’t want to stare. It works for me, because it means I don’t have to engage with people. If they won’t look at me, I don’t have to make eye contact. If they won’t get close, I never have to worry about them touching me.

I know there are a lot of Aspies who are happy to be single for their whole lives. I am not one of them. I don’t want to be alone. I like men. Quite a bit, actually. I just don’t know how to properly interact with them. My physical encounters have been rare and incredibly awkward. My last actual “date” was over a decade ago and a complete disaster.

The fact is, I’m totally fucking terrified of relationships. I know what I want. At least, I think I know what I want. I just haven’t a clue how to get it. The perfect marriage for me (or long term relationship, since I’m not sure I’m the marrying kind) is one where we live in a duplex, so I have my own bedroom, bathroom, living room and kitchen (or at least where we have separate bedrooms and bathrooms) and we only get together every other day or so. Yeah, good luck finding a relationship like that.

The very idea of dating makes no sense to me and the awkwardness of it all makes it doubly confusing to my Aspie brain. I know I’m a long way from being ready to date. I have a lot of work to do in the meantime. I have to learn to accept myself as I am before I can expect anyone else to do the same. In the meantime, the fat suit has got to go. Sure, I’ve got a shit ton of weight to lose, but I also have a lot of emotional baggage to shed at the same time. Oh, goody. More therapy.

Stimming

Yes, I stim. I can do it very subtly when I am around others, because I know it can freak people out. When I am alone, it’s a different story. I rock, I flick, I tap. I’m actually rocking as I type this. To neurotypical people, this is “weird”. I don’t particularly give a damn.

The world is an overwhelming place for an Aspie and stimming provides some relief. I rock myself to sleep at night because it helps my brain to straighten out some of the jumbled thoughts in my head. It feels good, even if it is “weird”.

I can’t just sit and watch TV. Either I’m tapping or flicking or I’m using a computer game to help me stay in the moment. It gives me a chance to spend some time with my roommates, while still doing what I need to quiet my brain.

So if you see me on an imaginary rocking horse, don’t be weirded out. Just be glad you have a friend who literally rocks.

Understanding Why I've Never Understood the Things I Don't Understand

Since my diagnosis, I sometimes feel like Alice after falling down the rabbit hole. The world around me looks so different. It is all too big, too loud, too bright, too everything. I’m chasing my own white rabbit, knowledge about living with Asperger’s, while seeking guidance from my therapist, the caterpillar. My fellow Aspies, diagnosed much earlier than I, are happily enjoying their tea party, content in the ways that they differ from the rest of the world. At the same time, I fear society, or the Queen of Hearts and her court, judging my differences and declaring that it must be off with my head. Like Alice and the “Eat Me”/“Drink Me” potions, I am constantly adjusting to fit my new world, not knowing what the end result will be or if I will find myself “going out altogether, like a candle.”

There are so many things I’ve never understood. What’s more, I’ve never understood exactly why I don’t understand. At least now I’m gaining some understanding about my lack of understanding. Things are very black and white for me, very logical. If you and I have a misunderstanding that leads to an argument, I feel like we should explain our positions, clear up the misunderstanding and end the argument. I don’t understand the need to keep talking about how we felt because we’ve already established that it was all just an error in communication. If I see a clear solution to a problem you have, I want you to take action and solve it, not talk about how the problem makes you feel.

This is not to say I am incapable of empathy. On the contrary, I feel enormous empathy. Perhaps too much, on occasion. My problem comes in expressing it. If you are hurting and there is no clear way to fix it, then I hurt for you. I just don’t have the capacity to give voice to that feeling. I have learned to say, “I’m sorry you’re hurting and I wish I knew how to help.” but that is rarely enough to make the point that I really, truly do care about what you’re going through.

I know I’m not the only one making adjustments and learning new things. I am accepting that this is permanent, because it is who I am. I am the Mad Aspie. Pass the hookah and pour me a cup of tea. I’m not leaving Wonderland.

Book Review -- The Uncharted Path: My Journey with Late-Diagnosed Autism

When my own Asperger's diagnosis at age 34 sent me searching for others like me, I found Rachel Cohen-Rottenberg's inspiring, moving and often funny blog, http://www.journeyswithautism.com/. While I am still searching for the words to explain what it feels like to suddenly discover as an adult that I am Autistic, Rachel has found those words and shared them in this very personal book. Rachel provides an inside look at redefining the way we communicate with the neurotypical world and learning to self-advocate. If you're recently diagnosed, or know someone who is, or suspect you are or do -- read this book instead of (or in addition to) the clinical analysis written by the "experts" who have studied Autism rather than living with it.

Silence

I've started wearing earplugs in my office.  I tried a few different styles, but found that the inexpensive foam kind are the most comfortable and effective.  These are the kind that you smoosh down with your fingers and put into your ears and the foam expands to fill the space.  There is this perfect blissful moment for me in this process, this wonderful little moment of joy when the foam finishes expanding and the world around me is virtually silent.  I would equate it to slipping into a hot bath after a stressful day or kicking off a pair of shoes that pinch your toes.  It's become one of the best parts of my morning.  I can still hear the phone ring and the intercom paging me, but the sound doesn't cause me pain the way it did.

I am also learning to say, "I don't know what to say" instead of stressing myself out over trying to think of the correct empathetic response to another person's emotions.  I have wasted so much energy worrying that I was going to say the wrong thing to someone when I wasn't sure how to respond.  Now I know the right response is the truth.  If someone is hurting and I don't know how to make them feel better, there is nothing wrong with saying, "I wish I knew how to help you."  It's the truth and it tells them that I care about the fact that they are suffering.

Damn, I'm deep today. 

I Think Today Is Not Going To Suck

I stopped at Starbucks to get my Venti No Whip White Hot Chocolate because I knew my office would be colder than a well digger's ass in January and they were playing David Bowie when I walked in.  Good sign number one.  They had fresh marble poundcake in the case.  Good sign number two.  I remembered today is my Friday.  Ha!  Three things telling me today is going to be a good day.

Yesterday I ordered some earplugs because my iPod isn't doing enough to drown out all the stupid that assaults my ears throughout the day, but I'm using different earbuds this morning and they're slightly more effective so I'm not so stressed about maintaining my sanity until I get the plugs.  I've never bought earplugs today and money is tight, so I wasn't sure what to look for.  I posted about the dilemma on the http://www.wrongplanet.net/ forums and got a lot of great answers.  I'm going to try out a few different types to figure out what works best for me in different situations.

Oh, hey, good sign number 4 -- iPod just decided to play "Race Car Ya Yas" by CAKE.  Fuck yeah.

Sensory Overload

If the average person starts at zero and gradually works up to ten before getting overwhelmed, my base level is probably a seven. I think I need to develop some kind of warning system like the color-coded Homeland Security Advisory System to let everyone around me know what the risk level is for a meltdown. Green, "Low Risk of Meltdown" -- I'm mellow and well-rested and can probably tolerate a lot more than usual, so I'm up for going out and having some fun. Blue, "General Risk of Meltdown" -- I'm feeling somewhat anxious and uncomfortable but I can still run errands and enjoy the company of people. Yellow, "Significant Risk of Meltdown" -- (this is the most common for me) I can only function at work with my door closed and headphones on. Anything more will elevate the threat level. Orange, "High Risk of Meltdown" -- I am probably overtired and have already put up with multiple assaults on my senses. I need some quiet alone time to put myself back together. Red, "Severe Risk of Meltdown" -- I am done. Leave me alone in my dark, quiet room or I will flip the fuck out.

I'm still learning what I can and can't deal with. I work with some exceptionally loud people and that makes downing them out with my iPod (I'm shopping for a good pair of earplugs now) difficult at times. What's more, they've taken exception to my need for quiet and have begun to do things like pound on the wall when they pass my office or stand outside my door while yelling back and forth at each other. I have no proof that they're targeting me, but this has only begun since my diagnosis. I made no announcement to my co-workers, but I did have to tell my manager what was going on so he would understand why I'm working with headphones on and keeping my door closed. I suspect he asked them to keep the volume down for me. It's been my experience in almost ten years working here that, if you ask them to be quiet, they only get louder. Am I surprised by their behavior? Not really. I am the only female and I have asked repeatedly for them to stop using the ladies room because it makes me uncomfortable and because they piss on the floor and that's disgusting, but they persist. You'd never know I work with grown-ass men.

Today is a definite Threat Level Orange.

On Crowds, Unpleasant Noises and Trying To Do Good

On Saturday, I went to give blood. I have done it only once before (though I have made four attempts and been sent away because my iron was too low) and had decided that one of my resolutions for 2011 was to give as often as they would let me.  I'm a fucking saint, right?

I made an appointment for 11:30, because the last time I had gone in on a Saturday without an appointment, I waited an hour just for the initial finger prick...and who wants to wait that long for a little prick? When I arrived, there was some kind of alarm going off -- a loud beep every few seconds. I don't know how it wasn't driving everyone else crazy but, holy shitballs, for me it was like torture. Every beep made my whole body tense up. I couldn't put my earbuds in to block it out because I was waiting for my name to be called.

Since I was a little bit early, I figured I could tough it out the ten minutes before my appointment time. It was very crowded and I took a seat as far away from the rest of the people waiting as I could. The chatter on top of the beeping alarm was grating at best, so I tried to keep myself distracted with a game on my iPod. 11:30 came an went. Soon it was 11:45. Then noon. I was still waiting, still forcing myself to tolerate the crowd and the obnoxious beeping.

I let one more minute tick by. I saw the nurse stand up to call the next name and waited to hear mine. Surely such a large organization that allows you to make appointments so that you can help them would not be more than a half hour behind schedule. The next name was not mine. Then a man walked in with two small children. The only seats available were next to me. The children brought loud video games with them. I was done.

I approached the counter and explained that I couldn't wait any longer, but would look at my schedule and make an appointment for another day. I felt guilty. I wanted to donate. I wanted to help people. When I saw that there were still five people WITH APPOINTMENTS ahead of me, my guilt began to ebb slightly.  Then the nurse gave me some kind of self-righteous sneer and I walked out with my guilt fully assuaged.

I still want to give blood. I think that pre-diagnosis, I would have just decided never to go back. Now I think I'll try a different approach. I am going to contact the director and explain my situation. Being on the autism spectrum, I can't deal with crowds and noise the way others can. I have emailed the blood center and asked what a good time would be for me to go in where there will be less of a crowd. This means less noise, less chance of waiting a long time and the ability to use my earbuds and still know when they are calling me.

--Update: I explained in my e-mail to the organization that I am not comfortable with the phone and that I needed to converse via e-mail.  Their e-mailed response told me to call them.  Guh.

It's Gonna Be An Aspie New Year!

We are now a week into 2011, a new year and a new decade. I have had a feeling for a long time that important changes were coming for me and my new diagnosis certainly fits that description. It’s exciting and scary, learning to navigate the world in a new way.

I went to Sea World with one of my roommates (Chick Tender) on New Year’s Eve, knowing it would be somewhat crowded, but confident I could avoid the majority of the chaos. Aside from three incidents, I think the night was a success. The first thing that happened was that we got caught behind one of the stadiums as it emptied from a show. Too many people, too much noise and no way out. CT (unfazed by the mess herself) tried to say something to me and I had to tell her, “I can’t focus on anything you’re saying right now. Please tell me again when we’re out of this crowd.”

That was a big deal for me. A short time ago, I would have tried to listen to her and get through the crowd and it only would have made me more overwhelmed and likely to have a meltdown. Instead, I said what needed to be said, then pushed my way to a wall so that the crowd was only on one side of me. I worked my way along the wall until there was finally some heavenly open space around me. I survived and didn’t have a meltdown.  Score one for me.

The second incident involved some hyper children whose parents were ignoring them. We were standing in line for The Polar Express and these kids were climbing all over the queue’s railing and pushing each other and alternately singing and yelling. After they had pushed one another into my back for the fifth or sixth time, CT saw how stressed I was getting and switched places with me. I think that made the parents notice how their kids were behaving and start paying attention, because they were much better behaved after that. Again, I survived.

When it was time to get something for dinner, off we went to our "usual" spot on the other side of the lagoon. To get to where we thought the restaurant was, we had to pass through a crowd. Not only was it a large crowd, it was a very loud one, as it had gathered in front of a stage where a salsa band was playing. There were cleverly designed cocktail tables about, with glass tops and bongo drum bases – even a hole cut in the top of the glass so the top of the drum was exposed. Cute, right? Sure, except that every asshole near them felt is was their sworn duty to drum on the damn bongos. This might not have bothered me so much, but it seemed there was not a single person in the crowd with enough rhythm to at least play the same beat as the band.

On top of the noise and the crowd, CT and I were then separated by the “I Have A Stroller So I Have The Right Of Way” people. You know the ones. The people who act like they are the first humans to ever breed and think having children means that the rules don’t apply to them and that they are excused from showing common courtesy? Yeah. There were a lot of them there that night. Having a friend nearby was the thing that was really keeping me sane, so the forced separation just about drove me over the edge.

Then we reached the other side, where we realized that we had already passed the restaurant back on the other side of the lagoon and that we now had to go back through the same fucking obnoxious, off-tempo drumming, drunk-dancing, goddamn parental entitlement crowd. I have never been so grateful to sit down in front of a hamburger in my life as I was when we finally reached our destination.

All in all, I still consider the night a success. I never had a meltdown, CT was supportive of my need to stop and refocus periodically and I ended up having a really good time. I’m really looking forward to the coming year.  But I swear on all that is holy, the next person who physically runs into me with a stroller is going to feel my wrath.  And it's pretty wrathful wrath, too.  So watch out.