I was wrapping things up with my therapist on Tuesday when we were going over the insurance part of my 3 month update (a bureaucratic procedure required by the clinic). I mentioned that it was 2012 and did he know what month this year the DSM V was coming out? He didn’t know the exact month, but he more than hinted as to why the DSM V was being created.

I have more than one diagnosis aside from Asperger Disorder, the official name of Asperger’s given in the DSM IV. I have Generalized Anxiety Disorder (no surprise there!) and Obsessive Compulsive Disorder.

I noticed on the paperwork that Asperger Disorder had dropped to the bottom of the  diagnosis list, while Generalized Anxiety Disorder & OCD were above it. My therapist told me that GAD & OCD were given priority so that it would be assured I would stay insured.

In short, insurance companies, even Medicaid, are looking for any way they can to cut someone to save money. Asperger  Syndrome will be a sub-heading of autism spectrum disorder in the DSM V, yes, but will it mean more able= less coverage?

My therapist indicated yes. He reiterated that was the reason why he & the clinic made sure Generalized Anxiety Disorder was listed first.

Insurance companies still decide reality. That said, make sure you or your child’s psychiatrist diagnoses your child with a “real” thus insurable disorder such as Generalized Anxiety Disorder. That’s 300.02 in the current DSM IV.

How many of us on the autism spectrum struggle with chronic, crippling anxiety? You aren’t fooling anyone or cheating the system, so don’t worry. Know your rights & stand up for ‘em.

Now for a lighter topic I will call “Allison-isms”

These are some observations from my childhood that I would love to share. Good for a few laughs and perhaps a few deja vus.

Sliding into Home Plate

Up until age 10, one of my favorite indoor games was base sliding. The stretch between bases was the  green plush carpet that ran the length of our hallway to the entryway of the kitchen. I’d say that would be about 15-20 feet. I’d run and take a flying leap at the halfway point (the folk’s bedroom entryway) and land, knees down, sliding to a stop on the carpet in front of the kitchen, exhilarated from the burning, chafing sensation coming from my knee-caps and lower knees. This was much fun at night or during inclement weather. However, I had to sneak the addictive activity in, because it was forbidden. The first time my dad saw my raw, red knees, often bleeding, he told me never to do that again, that I could do serious harm to myself. And didn’t that HURT? Hell yes, that was the whole point!

Keep feeling fascination

I found by the time I could stand and walk, that I adored spinning. The only object I enjoyed spinning, however, was me. I found that if I spun in place for 60 seconds, the room appeared in a 180 degree clockwise panorama the speed of lighting. That was downright supernatural, and I loved it. I could make magic and that was worth the side effect of being dizzy after feeling pure fascination for a half hour.

“Harvey Wallbanger”

From the time I could sit up, I body rocked myself to sleep. I still do that to this day. I no longer do it while asleep. I guess I get less ambitious with age. When I was 8, I got my first real bedroom set. I remember the period fondly. I cried for a week. The maple was beautiful. Crayola sheets were a nice touch, but the new smell and unfamiliar shadows were too much to bear- at first. Anyway, the bed had posts on the headboard, unlike the bookcase headboard on the old one. I rocked that thing hard enough that the posts banged into the wall. I was asleep, so I didn’t hear it. My sister in the next bedroom heard it, and she was irritated. “Harvey Wallbanger” she called me. “You’re going to give yourself a brain tumor.” My mom took an old foam pillow and created a wedge in-between one of the posts. That ended the noise. My head did hit the headboard very hard, leaving a red mark in the morning. I’m surprised an MRI wasn’t scheduled. My mom was never prone to panic. She taught me how to position my stuffed animal as a buffer between me and the headboard. When I was 11, I got a stuffed sheep-dog, which I still have today. He met size requirements, depth requirements, density. He had extras. His long front legs were handle-bars. To this day, doggy still takes a header.

Space Oddity

I pretty much saw in 2-D until I was 4 years old. The upgrade came with time and persistence, mostly on behalf of nervous family members who would scold my mom and ask her why I couldn’t just chance falling down the damn stairs for Christ’s sake! At least I wouldn’t turn out (Heaven forbid) spoiled rotten.  But the baby-gate stayed up, the money invested going twice as far. I was introduced and re-introduced to the stairs at home and in various places. They were a fact of life. And in my brain, at that time, the only way to go down them was to tie a blindfold around my eyes, take a deep breath and jump. I imagined getting up them was easy. But it is hard to ascend a ladder when there is only a railing on one side, and not as close in proximity as those on real ladders. Strange thing, ever since getting the concept of 3-D, I absolutely hate ladders. I’d rather take the stairs.

Quote

“When do we change? We change when the pain of where we are outgrows the fear of doing something different.”

My mother got to the point where she did not tell me what day or time we were going to a family gathering. Of course, on Thanksgiving & Christmas Eve, the cat is already out of the bag. My dress would be ironed and hung in her closet. Gifts had been wrapped the night before while I was asleep & locked in the trunk of the car. An hour before we were to leave, she would ask me, “How would you like to go to Grandma & Grandpa’s for a party?” I payed no attention to things like cooking and other preparation. At 5, I really don’t care about Tater-Tot Casserole or know whether or not it’s for a party or dinner.

My mother came prepared. When the weather was warm, I would play outside. After my Grandma and Aunts admired me in my dress and patent leather Mary Jane shoes, I’d change into the “play clothes”, ordinary everyday clothes & shoes (perfect for getting dirty), that she had brought in a bag.

I would rock in my chair with ferocity as I watched Christmas videos while I waited until it was my time to get ready. The videos kept my mind busy and reinforced the promise that Santa indeed soon would be there.

Before I could tell time, my mother would have to tell me, when the big hand is on 12, and the little on…

I didn’t miss the routine of daily life at all. It included school where I was lonely and later on, bullied. I only cried my 1st week back, after the new year. I cried the first week of every school year. My dad was so patient, he explained it to me this way: “You’ve fallen off of the horse (fallen out of routine, not done anything wrong), now you have to slowly climb into the stirrups, then onto the saddle and finally, take the reins.” Since I am both a literal thinker and somewhat of a metaphorical thinker, because I think in pictures and have always liked writing, I haven’t had as much trouble as some people on the spectrum understanding metaphors.

I had sensory issues, like the POP noise made when the cork came off the champagne, and the sound of the electric meat trimmer. I learned to stay out of the kitchen @ my Grandparent’s during dinner preparation. At home, the food-chopper was and is still a staple of Holiday cooking. My mom got into a routine of telling me when she was going to use it so I could leave and simply yelling “done!” when finished.

Unfortunately, there was nothing aside from fatigue that could be done to quiet me (my mom tried comforting me by sitting beside me in the back-seat) as I screamed coming from home to a gathering. Until I was 8, I didn’t have the words to explain about the humming coming from the tires on the road that was auditory unbearable. Usually, coming back, I was so tired, I fell asleep.

I never got bored @ a gathering. I was expected to help as I got old enough. I can remember being asked to help set the table by age 6. With my fine-motor skills being delayed, it would not have been a good idea to let me handle the glass flutes, but I could carry out the paper plates. If I got tired after dinner, I had my pick of 3 bedrooms to lie down in. My parents knew when I was sleeping,  and very aware to check on me in case there be any malfeasance via my cousins.

There was usually a rocking chair in each home I visited. As I got older, I also brought tapes and a Walkman. Kids have more electronic options at earlier ages. I imagine a favorite game, video, educational resource or autism-related coping tool on a Nintendo-DS or iPad  would be a good thing to check out.

I was alone a lot at family gatherings. I played alone and I made my own fun. I was expected to say hello to my Grandma & aunts. As I got older, I could talk to them and express my own thoughts @ the dinner table.

The very best part of the Holidays were when my Grandparents would come over and visit right after Christmas. It coincided  with my Dad’s birthday. We would have a turkey or ham dinner and watch a movie. It was a small gathering.   All the people who meant the most to me without any of the ones who didn’t. Not even the magic of Christmas eve or the fear my cousins instilled in me or upset routines could cast a dark shadow on that event.

I wish everyone a Happy Holidays and hope I have helped out a few parents. My blog isn’t about classic autism, so I can’t help those of you who need help there. Just know that there are many places that can. It’s much harder to be an adult on the spectrum seeking services and meaningful support. I speak from experience.

I had a clear picture of this male in his 40′s wearing rompers, drumming his heels and pounding his fists on the floor as he screamed “I didn’t get what I wanted. Waaaah!”

He complained about putting himself through hell trying to find a romantic relationship. He isn’t going to find it by being presumptuous and selfish.

People with AS (I especially notice the males struggle harder than the females), have a very hard time with social interaction. It is one of the hallmarks of the condition. I realize that. I also realize that it can be helped through patience and open-mindedness on both sides.

I am sick of the “Aspie” culture that thinks they are perfect the way they are. If you are overtly selfish, hate on others just because they don’t share in your opinion (very common on Wrong Planet), or don’t even accept someone caring telling you to “have a nice day”, because, like Brian King, you will decide what kind of a day it will be, then you are actually closer to being NT.

The only difference between us and NT’s are that they know the score; how to conduct oneself in a social situation for example. A lot of American NT society has decided not to. They have a choice whether or not to care about their fellow man. So do we.

Perhaps Brian King helps a lot of kids and their parents better understand AS, as he has it, and Wrong Planet is a hangout for some, but I believe the autism and Asperger’s community is not immune to bullying, persecuting, and selfishness from within.

We have work to do. Throwing a tantrum when you don’t get what you think you deserve from life and hurt someone else in the process will equal you staying stuck in a rut and missing out on life.

In short, it’s NOT all about US, “Aspies”.

I’m still learning this the slow and painful way, even though I was taught consistently and firmly from childhood not to interrupt when someone else was talking or to ask someone how they were doing. My parents didn’t have a diagnosis or any support. They went with what they observed: She is very absorbed in herself, talks a lot about her own self-interests. Fortunately, I was and am high-functioning. What a blessing. This means I could be taught. I still have a horrible time cutting-in on a conversation, but I save the other person’s feelings by acknowledging it and stopping it. I remember to ask other people how they are when communicating with them and what they’ve been doing. It’s a very nice feeling when someone asks about me. It means I matter somewhat in their life, even if I’m not their best buddy. I may never have what I want out of the relationship. I was able to reconcile a relationship due to a very patient and mature person. Through a few painful e-mails on both sides, we were able to come to the conclusion that I may not get exactly what I need from the relationship, but it isn’t her fault for not being able to provide it. It also doesn’t mean scrapping the relationship. The past week has been another learning curve for me. I want other “Aspies” to learn from this so we can stop hurting and hurting others.

So “Aspies”-we are not perfect

NT’s- you are not perfect

Now that that basic fact is out of the way, let us acknowledge that both groups are human and will make mistakes. The worthy ones will admit them and learn, move on and progress having a better life, even if it isn’t the life of their wildest dreams.

Hell is no alternative.

Oh, and if someone tells you to have a nice day today, try saying “Thank you.” You can still be master of your own mind & therefore day.

-autisticaplanet

It has taken me a long time to see that I’ve always had to be watching my back almost everyplace I went, not just in school. This is even worse for someone already anxious by nature. When a bully taps into the symptoms of a chronic disability, like my sound-sensitivities, they can ruin you forever, unless you are able to get away from them, and they are held accountable.

It’s bad enough a 10 year-old girl, someone who only completed her first decade here on earth, hanged herself in her closet because she couldn’t cope with the severe bullying at her school. I can’t imagine how her family will cope with that empty seat at the holiday table. I hope the worst of the pain felt  is deferred to the bullies (and their parents) who hurt her most.

Don’t let your child (or someone else’s) be a victim of bullying during this season of good will toward men.

Allison age 7 with her Grandpa Lester

I don’t know if this type of exchange is typical between spectrum people and NT’s, or if this kind of behavior is universal and is regardless of neurological classification. I am admittedly socially-mind blind.

Here has always been my definition of being a good friend:

1. Being consistent. Keep the lines of communication open. It isn’t like there is a shortage of options. I always send an e-mail (refuse the culture of Facebook & Twitter), call or send a card/letter in the mail.

2. Face-time is real, Facebook is fake. It’s easy for people to bully or dis you on Social Networking sites. They are anonymous and don’t know you. They don’t have to lay eyes on you. They don’t hear your voice or give you a hug when you feel bad.

3. Stop being “so busy”. Really. My mom was a RN and worked FULL TIME for 35 years. While she admits she wished she had more time with family, she also brings up how glad she was that she took the phone off on days off so work couldn’t call her up and ask her to come in. She made time for family, including her parents and siblings. They spoke on the phone. People were better connected then with so much less.

4. Turn down the technology. Technology in itself is wonderful. What we as a human race achieved on a scientific scale over the past decade is both convenient and amazing. We have cast a dark pall on that with our human nature, though. How many studies say we are isolating ourselves as a culture, generating apathy, preferring to indulge self-interests? Too many to count. There’s at least one new report in the news each day. The definition sounds eerily too much like classic autism. Willingly becoming severely autistic. How pathetic. How that pisses me off, someone on the spectrum who works to better herself.

So turn off that damn cell-phone the next time you’re with someone. Don’t EVER make your friend, lover or mother feel like the third party in the room. Turn your iPod off when having a conversation, that is, if you still use your mouth & vocal chords to have a conversation vs. your fingers.

I had Twitter, and I’m so glad to be rid of it. For me, it was multiple waterfalls of information bombarding me. On top of that, I had all of these strangers who wanted to “follow” me.

If you want to make your presence known on YouTube or Yahoo!, be prepared to be gutted, metaphorically speaking. Too many of us behave online like sharks that have just smelled blood. We can’t wait to go in for the kill. A teen-ager commits suicide. It seems  that the more things change, the more they stay the same. The reason why? I believe that too many of us plain old like it that way.

After all, fear, hatred and blame are way easier than making an effort.

I’m not perfect, I’m human. I’m a much better human than most you’ll find out there, because I’m authentic. Maybe that’s why I don’t “jibe” with most folks-on or off the spectrum. I don’t need to have friends if I need to “fit in” to a mold or sacrifice my good traits for acceptance.

I’d rather live out my life alone.

5. Forgive. But don’t be a “doormat”. Recognize when someone is using you or “taking you for a ride”. If they’re nice to you some of the time and do mean things to you the rest of the time, that IS NOT OKAY. Tell them so. If they don’t like it, issue them their walking papers. You will be lonely for a while, but it feels worse, I promise, than being used or abused. If they never return your calls or e-mails unless they want something from you, and only when you are giving them what it is they want, it is another abusive relationship. Friendship is a 2-way street. Some things are black & white, no matter what a therapist tells you.

One good friend is better than 1,000 Facebook “friends” that will “unfriend” you and disappear over time, only to be replaced by more of the same. If you can find that, and I must say, I hope for that myself (but I’m no longer holding my breath), you are among the richest people on earth…for those people share the exact same thing with you. How do I know? I know what I’m missing, that’s how.

Best of luck, folks. Hope I made some sense.

-autisticaplanet

P.S. I know some of you are “literal” thinkers. If you don’t understand one of the many metaphors I use, simply print my entry out and feel free to share with someone who thinks (too much) in pictures.

Enjoy your turkey. Enjoy your family. Enjoy the Holidays~wireless!

Follow-up 11/20/11

A male with Asperger’s Syndrome wished to move beyond the You Tube e-mail and communicate off-site. Since I’d seen his videos before and had e-mail contact with him before via You Tube, I felt I could trust him as far as one of my disposable e-mail addresses. Here’s another tip, folks, never give out your e-mail to someone you’ve just met, whether in real-time or virtual time. When you do, create an account other than the one you pay your internet bill to like AOL or Gmail (unless they are your ISP). Anyway, when this male adult  with Asperger’s  was told I was not looking for a romantic relationship, he immediately told me he wouldn’t be writing anymore, because that was exactly what he was looking for, romance.

The relationship had to be his way or the highway. He missed out on the chance to know a smart and creative woman due to his stubbornness.  Stubbornness is a huge stumbling block for those with Asperger’s Syndrome. I am not immune to it, but I have chosen long ago to get therapy in order to be a better person. I realize I still have a long way to go, especially in the area of social interaction. I’ve spent so much time on sensory issues. I hope this person gets the help he so sorely needs, because he conveyed to me how lonely he is. It is painful to break out of a box that never was of an “Aspie’s” own making, but it has to be done. Not all-at-once; slowly and in stages. For the mind-blind, a seeing-eye dog is sorely needed. For a listing of services near you, visit http://www.maapservices.org

You can also Google OASIS @ MAAP to be connected to a virtual online source complete with newsletter and forums. This is for people of all ages struggling with ASD on the high-functioning end.

Back in July, an old acquaintance looked me up. I had been re-injured by another acquaintance that I looked up a few years ago, so I was on high-alert. I discussed this with her and with my therapist. As the past few months went by, I learned to take things slowly and ask about the social climate of things I didn’t know about. One of those things was about job responsibility; obligation. It almost got me into trouble, but I remembered to slow down and find out the facts rather than jump in and accuse.

I now know that people may have to break a date to work for someone who has had a family crisis suddenly occur. This person would want the same respect shown to them in return. There is a reciprocation and connection amongst co-workers just as there is in other social structures from families to friendships.

I’m glad I didn’t go with my impulsiveness. I’d have missed  a lovely bike ride along the river as well as the things that are (hopefully) to come.

I would like to thank my mother and therapist for taking the time to help me be a more mature adult and to better live life on the autism spectrum.

I would like to thank my acquaintance for her kindness and patience.

On a different but related topic, my earplugs worked very well on the bike ride. They blocked out the acuity of traffic while allowing me to hear my acquaintance. No yelling required. If you are interested in my ear products, please read my post “autisticaplanet’s ear gear”.

autisticaplanet by the river