Tuesday, March 24, 2009

Space to be Himself

Well, I'm in the midst of business conferences and such, and haven't really had much time to blog. Even now I should be doing something else, but had this epiphany on the subway and thought I'd share. Good thing too, because I was treated to a heartwarming comment on this post (My First Hug).

Anyways, I was thinking about how I just needed to hold myself up a little longer and make it back to my room. Slap on my happy face so no one will think nothing is wrong with me. Inside I'm pretty upset about things going on in life but none of my business associates care about that.

As I exited the subway toward my hotel, I got angry at having to pretend to be someone else all the time. Pretend to be someone else on the job, pretend to be someone else at church, pretend to be someone else at home (well, actually, I've just recently started doing that b/c I realized that I don't treat my wonderful husband very well and ought to start being as nice to him as I am to the people I work with).

Then I chided myself for putting on a pity party, since NTs have to do the same thing. They're putting up a front all the time- to get your business, to get your acquaintance, have a decent working relationship, etc. They do it easier than we do. And they (usually) don't have that hard-wired sense of honesty-to-a-fault that makes it hard for (some of) us to be "polite." But they're still being "fake" much of the time.

Then it hit me.

My poor little boy- from sunup to sundown is being told who to be, how to act, what to say, etc. Unlike his mom, he can't go home and retreat into his private space because right now (temporarily) he doesn't even have his own room. He can't retreat into his home office to decompress. I don't suppose it ever occured to me that he even NEEDED space and time to decompress and be himself. I thought that came with a job, bills, and responsibilities :-) No wonder he's so angry and frustrated and never at peace. Not saying a little downtime would solve all his behavioural problems, but if it helps me I can't help but wonder if it will help him.

I'm going to discuss this with my husband and look at what changes we can make in this area. In the meantime, feel free to let me know what you think.

Monday, March 9, 2009

Early Diagnosis a Blessing or a Curse?

This post was inspired by blog hopping which ultimately ended up here at Autistic Aphorisms discussion of whether early diagnoses is a good thing. As one who has testified before my state government on issues related to autism, I have seen both sides of the coin. I think this is a discussion worth having.

You know, I remember what it's like to bang my head against the wall, both calling out for attention and trying to dull the pain. Well into my teens. Over time, I also discovered how such behaviors are interpreted by "normal people" and have learned better ways of getting my needs met. I've learned these things painfully and slowly, and with the advantage of moving faily often (a traumatic experience which I only endured because it allowed me mulitple opportunities to "start over," each time reapplying what I've learned). So it would have been better to be diagnosed with autism rather than awkward affect or whatever it was they told my mother because then someone might have helped me. Someone might have determined whether diet or environment has any effect on my processing, anxiety, and behaviour (it does) and whether behaviour modification and social skills lessons would be of use (they were). But those were things I discovered on my own.

And all aren't so able. If fact, I'm thinking specifically about the sunday school student I wrote about in the contact page of MarylandAutism.org. Everyone could look at her and tell that something was wrong. She headbanged, communicated in grunts, needed a strict routine and endlesss repetition to calm her. Yet no diagnosis of any kind for years. When she was diagnosed- I forget what it was exactly, PDD NOS I think, but that was a year or two before she passed away. After that, she made fantastic progress in a excellent school for "such children." 16 years of pain- some of which could have been eased with an early diagnosis.

But would that have really helped me and others like me? I doubt it. Had I been diagnosed as a child, there wouldn't have been much done to help me. I would not have been provided much in the way of "accommodation" (and rightly so, because there are children who can't even communicate- and I'd rather scarce resources be directed to them, not someone like me). And the bottom line is, the key thing for me was someone breaking through into my imagioned world and making me realize that there was more to life out there if I was willing to work through the anxiety, pain, and accept that others exist outside of (and independent of) me.

Actually, now that I think about it, I wouldn't have the job I have if I had been diagnosed so maybe I'm not qualified to even speak on this question!

Indeed, my life would not be where it is now if I had been able to hide behind a cloak of diagnosis, or been allowed develop the sense of entitlement that I'm noticing with some of the younger adults I work with. Its the feeling of "you have to deal with me- and accept me as I am- because I have a condition..." Unfortunately, the world doesn't work that way, and I think we do these young folks a disservice by perpetuating that feeling... yikes, I'm going to get flamed when I show up at the next aspie adults meeting...

Anyway, I've pondered the diagnosis thing mainly because of my son. I know from my work and study that he would be diagnosed as having Aspergers, if not Autism. But I'm hoping that with diet modification, expectation management, and a little patience on my end, that I can mold him into a productive young man without drugs, craziness, or diagnosis. I don't know if that's possible (we're slowly approaching a tipping point, but we've stepped up our game and things are holding steady for now).

I'm curious what others think- those of you who have been diagnosed how has it helped/hurt you. Those of you with aspie or autie children, how has it help/hurt them?

Friday, March 6, 2009

My First Hug

I was reading some mom websites today- moms of autistic kids... kinda started out with one from one of my commenters and (as usual) one mom blog led to another. As I read about their struggles, I reflected back on the first time my son gave me a hug. I'm not talking about the first time he ever snuggled with me, or the first time he held me (he was always a snuggler when sleepy or nursing). But the first time he purposely threw his little arms around me and gave me a big hug.

I was sitting in church, few years back, thinking how unfair it was. Someone up ahead had just been kissed by their six month old. Kissed. I didn't even know six month olds could kiss. I'd never been kissed my son. Never been hugged by him. I looked at my friend trying to restrain her 16 year old autistic son. Is that what the future holds for me?

As if on cue, my son perked up, wrapped his arms around me and nuzzled into my neck. He was almost two years old. I cried for the rest of the service. And about a year later I would hear "I love you." Even though it was simply a mimicked response it was still sweet music to my ears.

How I cherish the little victories...

Thursday, March 5, 2009

A Cure?

Today in Austism Bites, there I read a post called "Autism Opinions and Noses, Everybody Has One which discussed autism research and where the bulk of the money should be spent. Should we spend more on research to uncover the cause behind autism or spend the bulk on research to help people deal with the "hear and now."

Here is my comment to their post:

This is a tough one for me. Tough because I look at my life and what I've done for myself and I know that I like who I am. Yes, I process things differently from others, and no, some of the "social neurons" don't exist. But I've learned enough "social graces" to mimic what I wasn't born with, and have found ways to work around certain aspie traits that trip others up. Also, I have a wonderful spouse and kid and a rich scientific career. I doubt I'd have either were I like my NT sisters and brothers (all 7 of them) because I'm the only one who is doing well for myself. And I'm truly happy. So the thought of "curing" me scares me. The thought of not being "me" because society found away to prevent autism (to prevent "another generation lost to this disorder" as another commenter put it) scares me.

BUT... then I go to meetings for autistic/aspie adults and see those who cannot take care of themselves like I can. Or interact with the autistic child of my friend who can't speak and has twice endangered the lives of his parents.

Then I'm not so sure. Not sure what is the right answer, and not sure IF there's a right answer.

Monday, March 2, 2009

Do I Look Fat? The Aspie Answer...

I was reading Jeffrey Deutsch's blog today and one of his commenters provided a vivid example of how things Aspies say can cause damage when they weren' t meaning to:

Such as how an Aspie may answer the question, "Do I look fat?" Responding, "Only in the butt area, but nowhere else."
If I ask you, does this make me look fat, *I* would appreciate that honesty, because I don't want to think an outfit makes me cuter than it does. And I certainly don't want to buy it if it doesn't flatter my figbure any better than what's already in my closet. I'd rather save my money. But many people would not like that answer. They already know the outfit makes them look fat. Or, more acdurately, their fat makes them look fat and they look even worse with an outfit not cut to flatter their particular body shape.

Honesty was one actually of my downfalls in retail sales. A client would ask me if something looked good. I'd tell her no, offer to help her find something more flattering, but she would get mad and not buy anything. I tried little tactics to be honest without making the clients mad, but they didn't really work. For example, I might have said, well, it's not your best color- maybe we can find another shade (knowing there wasn't another shade so she'd have to get a whole new dress). A LOT of women go into the store and buy things that do not flatter their complexion or are not cut for their figure. I thought being honest and trying to help someone find what's better would bring the customers back, but only a few ever got to the point where they would allow me to help them. And once I got there, I was good and my regulars knew they could trust me to make them look fabulous. More often than not, most customers would just decide not to buy. My coworkers encouraged me to let them spend their money. It wasn't about the clothes, but rather the "shopping experience." They wouldn't really wear most of those clothes anyway. They'd just sit in the closet until years later when they were donated to Goodwill or something.

Wow. What a tangent I'm on. W

ell, I said all that to say we, as Aspies, really have to pay attention to what we say and realize that not everyone appreciates "honesty" the way we do.

Looks Matter

Someone on a private email list I belong to mentioned something about how you look is very important, that people really judge you on appearance, clothing (style, cleanliness,
condition), body odor, hair, etc.

I forget the exact topic but we talked about personal appearance and cleanliness- things such as washing your hands after using the bathroom- the very first time I want to an aspie support group. While it was all stuff I had already learned by trial and experience, I remember thinking it would have been nice to have paid better attention to that stuff when I was a younger adult.

My mom tried to teach me proper grooming and etiquette, but I didn't see how connected that stuff was to my lack of friends. It was just extra work, and stiff scratchy clothes (instead of my favorite soft cozy smelly (to others, not me) sweatshirt). And since, in my mind, taking better care of my physical body wasn't connected to any other goals I had, I couldn't be bothered to do it. It wasn't until I got out into the workplace that I learned the importance of presenting yourself in a good way.

As I began to take better care of myself, I discovered that opportunities to interact with others (friendship and employment) have opened up more. And I've also noticed that being clean-cut (well groomed, smell clean, clothes professional looking and ironed) really helps me get the assistance I need when I go somewhere. I'm sure there's more to it than just appearance, but I think appearance really helps.

Hope that helps someone...

Friends- Do You Want 'Em?

I'm thinking about friendship today. My friendship landscape is much different now than when it was when I first discovered about Aspergers Syndrome. Someone in a private forum I subscribe to mentioned it was important to discuss setting realistic and manageable goals. I'm not sure what he/she meant, but I'm debating hat for mysef at the present.

For example, I'm discovering that I have to decide what balance I want: A lot of "ok" friendships or a handful of quality friendships. If I want to have a lot of friends, I have to accept the fact that very few people live up to my high standards. And people don't like being around those who make them feel bad about themselves, which folks with high standards tend to do (even without trying).

So I have to choose between just having the rare few close friends (all of whom are Aspie, incidentally) and spending time with people who may be fun in other aspects, but whose conversation isn't always not 100% meaningful. The few close friends I have almost always provide quality, thought-provoking, and meaningful interaction but (like me) can only tolerate so much interaction so there's less of it. And we don't go and "do" very much. We do things where we are existing together, talk on the computer or while walking or go to a bookstore. That's comforting and calming.

Whereas on the other hand, I sometimes hang out with the more shallow group (until I reach MY limit of personal interaction) but doing that means accepting that part of the conversation will be about "stupid stuff" and part will be shallow vanity girl stuff that's not important to me. The advantage to this is learning more about style and shopping, and just having more opportunities to hang out with someone. If I get in a people mood, I have someone to call if my favorite people are in their usual solitary mood.

The thing is, until I acquired a family, I had very little use for the shallow friendships, because I have so many social funcitons as part of my job and church that I rarely get in a people mood without people around. But another dimension has surfaced, now that I'm learning to develop these type of relationships: I see that such things really are the glue that makes the rest of society run. Coworkers, people who teach/care for my son, neighbors, a LOT of life goes smoother when you take the time to be "shallow" with people.

And I don't understand it. It's just that I don't operate that way. See, if a neighbor needs help, I'll help just because I'm a neighbor and that's what neighbors do. But someone else may not help me because, even though I'm a neighbor, I never chat with them like the other neighbors do. Similarly, on my job, if someone needs me to do XYZ for them, I'll do it whether I like them or not-it's part of my job. But I finally noticed that most of the time I need something done, it usually only gets done when I approach the people with whom I've started a "chit-chat" kind of relationship. Or, of me, a relationship isn't built on one or two-line emails back and forth. I want meat, I want rambling. I want to understand what you think and why you think it. But others are scared off by that sort of thing, so in order to forge relationships I must be short and sweet. I don't understand it, but that's how it seems to work... Maybe someone can explain it to me.

In the meantime, I'll keep working at it.