Hugging

I recently learned that there is a whole series of unwritten rules about hugging, rules that in 35 years of life, everyone just assumed that I knew and was purposely not following. This of course was not the case, but one of the bad parts of being autistic is not knowing these unwritten rules and not being able to figure them out on your own.

For me a hug was a hug and all hugs were created equal. I had no understanding of the difference between the "I'm just being polite" hug and the "best friends" hug or even the "I barely know you" hug. To make things worse for me, I'm sensory seeking for touch, so I love to squeese and be squeesed, so being hugged has always been a good feeling.

My fiance gave me a quick tutorial on hugging a few weeks back. She'd realized, as she learned more about autism, that the reason I'd been hugging in what seemed to be a creepy way, was that I didn't know the rules. So now I have the added joy of having to think when someone hugs me, "what kind of hug is this?" and "where is the let go of me sign?" Of course there is an advantage for her, now she's the only one who gets hugs from me that are undistracted by thinking about the rules.

Dealing with the Ex

My ex-wife, and the mother of my children, is about as neurotypical as they come. She is great at social interactions, even if she has a total lack of tack (but seeing as she's proud of her level of tack I suspect that it's on purpose.) She often has troubles understand why I or our son do some of the things we do. She also has a habit of picking and choosing what information she retains (i.e. her version of events is more inline with her wish and less in line with facts.)

When our son started having troubles socializing appropriately and was behind in speaking, she was quick to blame me. She had many stories of imagined abuse and other horror stories, but in her mind everything was my fault. She's the kind of person who rarely if ever accepts responsibility for their actions. At first we thought of him as some sort of ADHD, as that is the label I had as a child and he was identical to how I'd been at the same age (the differences between us didn't show until he was six, the point when I suddenly started talking with the ability and vocabulary of an adult after three years of no improvement in ability.)

When our son was in Kindergarten the school he was in told us that they didn't know what was going on with him, and refused to attempt to do so themselves (even though they are required to in our state if they suspect something.) We were told that we had to take him to a doctor, or they'd keep treating him as an unknown. By this time someone else I knew had pointed out that my son was similar to her son at the same age, and her son was diagnosed as on the autistic spectrum. This started me thinking that this was the case. We took him to the doctor and he was referred to a neurologist. The neurologist determined that he had ODD (oppositional defiance disorder after only spending 15 minutes with him.) This confused me some, but if it was true then at the time that meant that I also had ODD (even if that didn't seem like the correct fit.) Later our son changed schools, and they evaluated him when the data from the old district didn't match what they were seeing and determined he was on the spectrum. I took this information and went to my doctor and got referred to a neuro-psychologist who tested me and officially diagnosed me with "Classic Asperger's."

Now my ex believes that I obsessed on having to have something wrong with me, and that I manufactured being AS myself. Even though I told her about the testing and the results, she refuses to remember that I was tested and that the results are official. She also seems to think that our son was label ADHD by a professional, when it was me saying "he must be ADHD, because that's what I was labeled with and he's just like I was." Seems that to her what I said was "He has ADHD, I wish I was like him when I was young."

This of course is a clear example of what trying to talk with her has been like. No matter what I say, she hears what she wants. It was always a cause of stress on our marriage, and every time I said "that's not what I said" she'd say that it was what she heard, so she was right I was lying. And the same troubles communicating continue today. Saying I had plans and couldn't take the kids extra once three years ago means I don't want to be involved in the kids' lives today. But good news is, she did agree that our son is better off living with me and he'll be moving at the end of the school year. Soon he will not spend most of his time hidden away in a dark room hiding from the sensory assault that is what his mother considers normal light and sounds. But I bet the communications challenges will continue.

Stims

One thing that is often a part of being autistic is the need to stim.

From http://en.wikipedia.org/wiki/Stimming

Stimming is a jargon term for a stereotypy, a repetitive body movement that self-stimulates one or more senses in a regulated manner. It is one of the symptoms listed by the DSM IV for autism, although it is observed in about 10 percent of non-autistic young children. Many autistics have no stims.[1] Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, echolalia, perseveration, and repeating rote phrases

I'm not sure about the 10% figure for non-autistics, but people with ASD clearly stim at a much higher rate. Stims are also not limited to body movement, playing a CD or even the same song over and over can be a stim. Stimming is much more than the above article claims.

For me, stimming has a calming affect that is more than just relieving stress. Sometimes I stim because I need the distraction in order to be able to pay attention. Sometimes I'm not able to focus on one sound over the others without stimming. I have troubles when there are several sounds going on around me and I need to pay attention to just one, sometimes stimming makes it easier to focus on and separate the one sound I need from the others. And other times I have no idea that I'm stimming, or even why. When this happens it has been known to drive my fiance crazy (to her credit she loves me, quirks and all.)

My common stims are rocking back and forth, bouncing a knee (or foot tapping,) listening to a CD or song on repeat, and of course all kinds of hand flapping, tapping, wringing and fidgeting. Less common are spinning, walking back and forth or in circles, chewing on the insides of my mouth and stacking things. My son also rocks back and forth and flaps his hands and listens to music on repeat. He also chews on his fingers and clothes and feels the need to taste everything (and I mean everything.) Good news is, he does not make his fingers bleed (and I don't bleed when I chew on the inside of my mouth,) but he does do a number on his shirts. Somehow I'll figure out how to copy what my mom did to get me to stop chewing on my fingers and clothes, hopefully I do so soon (replacing shirts every month or so is expensive.)

I've learned the hard way that trying to not stim is bad. If I don't stim I become less functional. It's just a fact of life for me, so I just let it happen and no longer try to stop it when I notice. So the next time you see someone sitting down, rocking back and forth while flapping their hands, remember that it might be someone like me.

Sensory Intergration Disorder

Sensory Integration Disorder is commonly co-morbid with autism. My son has issues with sound still, something I've gotten used to as I've gotten older, but sometimes a surprise sound or some tones can bother me. He often will place his hands over his ears and scream "Too loud" in hopes that I'll make it go away. This make going to the movies a challenge sometimes. He and I both like watching a movie on the big screen, but often the sound is turned up so loud in the theater that he has his hands over his ears most of the movie and I sometimes wince in pain at times during the movie.

In addition to troubles with sound comes troubles with light. It can be bright light, or unnatural light like florescent or both. We both have troubles with both. He seems to be mildly affected by bright light, and more seriously by large tube florescents (luckily for us the compact florescent lights that replace normal light bulbs don't bother us most of the time, poorly made ones can be a problem.) I'm the reverse, bright light bothers me greatly and florescents much less so.

For me, florescent lights that trouble me make me dizzy and I start to feel sick to my stomach. One place that does bother me is OfficeMax. If I walk in the door, I start to feel dizzy right away and over time it gets worse.

Bright light can be worse. First I can't see as well, everything gets fuzzy and often my eyes close automatically. If the exposure continues then I can get a headache that can be described as a migraine. The pain can get so bad that I can't function until I've gone and hidden in a quiet and dark room for awhile. This happened to me yesterday. Someone turned on a light near my desk. It was a bright florescent light and it shined right into my eyes. I have a reasonable accomodation in requiring a lowered lighting level. I had a telecon meeting to attend, and by the time it was finished (sitting under the light for close to two hours) I was in pain and feeling ill. I was pretty out of it and went searching for somewhere dark. I did find somewhere and got the overload handled. I also contacted management, the light were turned off, not long before I had to leave the office for the day.

This occurrence brings up another issue, how ethical is it to use someone's disability to try to get one's way? The co-worker who turned the lights on wants me to move. He wants the four desk area for himself, even though it was built for my job-role not his, and never mind that I'm one of two and he's all by himself no team mates or direct peers. He tried to suggest a place for me to move that would have put me in reflected sunlight much of the day (it had a direct line to a window. He's been pushing to have the area cleared so he can have it to himself for over a week.