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.