Random Gut Reactions

Friday @ 1pm: I actually wrote this post last night and slept on it before I published it. I haven't re-read it before pushing the "Publish Post" button so I hope it has some flow to it...

This post is the result of random gut reactions to various things. The following articles spoke to me in various ways and I wanted to include them in my journal for various reasons. It's great to see that other parents can relate to what I experience on a daily basis (no matter how typical I sometimes try to make us appear on paper and in public). It's a relief to hear that people have seen the contradictions within the same person, the same day, the same 30 seconds, of one extreme to the other. I know that I'm incredibly blessed to be turned down for services because The Elder doesn't qualify. I know that I'm blessed for a thousand million reasons that somehow I married The Hub. But the blessings don't open a gate for us to escape autism.

Read this from a post at Momformation:

"Part of the reason I began writing about autism is that there’s so little information available. I know, it sounds nuts: if you Google the word “autism,” you’ll get over 18 million search results. But here’s the thing: most will focus on causation, many on treatment. If you read news articles, you’ll get the same result, except with more celebrities, statistics and fear-mongering. But precious few will give you any idea of what autism is like, really like, on a human level, day to day, for families like yours and mine.

"It’s not surprising, really. After all, autism is a spectrum disorder, which means that people with the same diagnosis can appear dramatically different. They may be verbal, nonverbal, hyperverbal. They can be acutely sensitive to sound, or appear as if they haven’t heard a word you’ve said. They can be constantly in motion, or quiet and still. They can crave touch, or avoid it at all costs.

"When my own son was diagnosed on the spectrum, I was shocked: he didn’t fit my image of what autism is supposed to look like. He’s funny, warm, playful and smart. He thinks farting in the bathtub is the the height of hilarity.He loves to play with cars, sing songs, look at his picture books and snuggle. But his language is delayed, and he struggles with peer play. He flaps his arms when he’s excited and can fixate on opening and closing doors when he’s anxious. He can count to ten in seven languages. but has trouble telling me what he did at school. He’s a handsome little bundle of contradictions, that one."

And I found this on Wrong Planet:
"I am a parent. I have Asperger's syndrome. I have two grown children, one of whom is on the autism spectrum. I am very aware of how parents can react to an autism spectrum diagnosis in their child. It's not hard to find descriptions of their reactions on autism support sites on the Internet or in the popular media. I know how my friends and acquaintances have reacted to their child's diagnosis. It's unfortunate that many parents are frightened by the diagnosis. It's tragic that they are frequently given endless amounts of bad advice which leads them to waste their time and energy and money. Some of the ways they react emotionally, and some of what they do to their child is, at the very least, less than optimal for their child's development."

"Autistic people contribute to their communities in many ways, no matter what constellation of obvious abilities and disabilities they demonstrate. Autistic people are valuable as they are. They don't have value only if they can be transformed into less obviously autistic people."

"Autistic children love their parents. You may have to learn to see how your child expresses affection and not take it personally if your child doesn't show affection in the way that typical children do. Deaf children may never speak the words, "I love you," and Deaf parents may never hear those words, but it doesn't mean that Deaf children don't love their parents. "

I think the most difficult part that I have as a parent and wife of persons with Aspergers Syndrome is balancing the the NT and ASD worlds. What the NT world expects in order for one to be successful. We can have a completely "NT Day" and then then next day be a total nightmare (we haven't had one of those is a while thank goodness). But worse, the flip flop of NT and ASD moments within the same day can send others confused, frustrated, angry, depressed, anxious, etc. Oftentimes for our household, it is these things that are the major contributions to the "social dysfunction" because the NT world doesn't understand and shuns them. Do the "Less Obviously Autistic People" of the world have it easier or harder? How do you "fit in" and embrace a neurodiversity philosophy at the same time? Is that possible? Is that smart? My boys have to "pretend to be NT" in order to be accepted, to survive a social without being asked a million times "what's wrong" or if they are "ok" or having a "good time," or to just have a conversation. The people who only know them when they are "playing NT" have no clue of who is truly in front of them. Of course to them they are "normal" because in some situations they have been adequately "trained" to appear so, whether through experience, habit, therapy, movies, or whatever. But at other times, they are "normal" because they naturally do and enjoy what would be considered "normal." I can definitely see how someone on the outside looking in could be totally confused by that. I guess that is why they are "Less Obviously Autistic People."

The Hub was raised in an NT world without knowledge of his ASD. He turned out fine. BUT I can tell how he is so much more relaxed to be himself and to be OK when he is not supposed to be himself ("play NT"). It is almost as if he took a bite of the apple and his eyes were opened and all these solutions to life-long questions and questions he didn't even know to ask came flying at him at warp speed. I experienced that too, but I'm sure for me it was on a much smaller scale. I have spent the last 19 months learning to understand why I was being driven away from my "perfect" family. What was wrong with me as a mother, wife, human being that I was so unhappy and unfulfilled among all these blessings? When we got a diagnosis, I had the most huge sigh of relief, and at the same time, a huge anchor landed in the middle of my chest. Since the diagnoses, we have been exposed to solutions that are working, and I am happier than I ever thought I could be. I went from feeling stuck to lovestruck. When The Hub does something quirky, it is so neat to understand WHY and be ok with it - to "forgive" it, if you will. The same for The Elder. I'm so relieved that he can even answer the question WHY now. It helps me get to answers and solutions so much faster, even though he still isn't always able to effectively articulate himself, especially in high stress situations. Usually I can translate it pretty fast. He is a happy kid I can tell. Now just like his dad, he would have turned out fine, but now he is going to be better than fine...because he bit the apple at 3 instead of 36.

They didn't all of a sudden become different people, I just had to muster up some patience, compassion, and change my perspective. The NT world sees an "angry face" but I see that his ears are hurting and he probably wants the radio turned down (or a different station). The NT world hears doors slamming but I hear a person so hyperfocused on a thought or task that he forgot to monitor his proprioceptive reaction. The NT world witnesses a bite (for The Elder) or an uncomfortable stare/complete avoidance (for The Hub) and I see him at a loss for words to describe either or both his positive and negative feelings that may or may not be directed at me. The NT world thinks he is rude, disrespectful, and only thinks about himself, but I can just laugh at the irony in that, resting in peace to know that I have true gentlemen in my house. The NT world says "Oh he's just being a kid" or "that's because he's a man" and I say that those are also labels. I personally like the Asperger Label better because it initiates feelings of passion to succeed and a desire to overcome obstacles, whereas the others elicit feelings of complacency, a dead end, lower expectations, regression to being average. But I guess that is what "normal" means huh?

Then no, siree...I do NOT have a normal family and I love and accept them!

1 - Find Out Who Comments on This Post:

Elissa - Managing Autism (visit their site)

Thank you Jen for sharing.
It really is a balancing act between the NT and ASD worlds - and it's absolute chaos at times...
... but you have a wonderful family and you are all so loving and accepting.
And I'm proud to say that I don't have a normal family either, and I wouldn't have it any other way!!!