Who, What, When, Where, How, and Why...

This is a blog about Sam specificially and, by default, the Autism Syndrome that I am only just beginning to really delve into despite the fact that he's had that phrase "attached" to him for well over a year now. I find myself telling lots of Sam stories and it seemed only fitting to start putting them all in one place so that I could refer back to them one day when he is wildly rich and famous after having pursued some very creative and artisitic field. I've already annointed him as "the child who will support me in my old age" and we affectionatly call him our little Spielberg. He is, the Samster, very much the "corrector" in training--just ask him.

I don't much like the whole "diagnosis" of Aspergers, but it will do for now. Some of it is very fitting for Sam, some of it--not at all. Since it is a "spectrum" disorder, you have to sort of grab at behaviors here and there, which makes things a little murky, IMO, and can lead to just about every kid on the planet having some Aspergerian tendencies if you want them, too, but, honestly, there is certainly no denying that he is "classic" in some senses and we're using that to guide us anyway. I feel that we're only just beginning to really unlock the things that are going on in that head of his and we may have many things yet to discover along the way. It's rather fascinating to watch the process unfold, really, although in the beginning I was in denial and then overwhelmed with the whole idea that he wasn't going to be "normal"--whatever that might be.

There is a great deal about Aspergers on the web--some of it is factual, some of it is opinion and some of it is just downright crap. One has to read and weed with a critical eye. Sam is definitely a "high functioning" child with Aspergers (that sounds so yuck to me). He appears neurotypical or NT to most people in most settings. I'm sure that no one would ever look at him and say, "Wow, look at that autistic kid" or "He's in special ed", which is, I suppose, a "good" thing, but then again, when he is having a stage 4 melt down in Kroger over something trivial, when he's making loud space alien beeps and squeals, or he tells some woman that she looks really old and scary, it would be nice for them to understand WHY he does what he does instead of just having people stare and point or glare.

I struggle with how to deal with what to tell people or if I should tell people. He's getting to the age where some of his behaviors are a little bit "odd", so I feel like we need to explain him, but then I end up sounding as if I'm trying to pity him or label him or something so I don't say anything. Then again, in some situations, such as Sunday school or even at the dentist as I discovered, they actually really do need to know his situation so that they can better communicate with him or understand why he reacts a certain way. It's frustrating.

Broken down, I would classify his Aspergers characteristics as:

• social: he is very immature, doesn't handle transitions well, has trouble with things such as sharing, waiting, expressing emotions appropriately, talks out of turn, blurts things out without regard for other people's feelings;
  
• receptive language: he doesn't always process what people say correctly, he doesn't always process multi-step directions;
• obsessive: he fixates on certain subjects or ideas, such as being imaginary characters or animals (this is his all-time favorite things), he makes lots of weird sound effects, he loves to talk about HIS subjects and can't refocus until he's finished;
  
• language: he uses stock phrases that he has picked up from other people to cover himself in uncertain social situations; he likes to tell other people what to say and insists that they use his "script" word for word and he won't drop the subject until that has been completed; repeats storylines that he creates for himself over and over;
• anti-social: talks about certain subjects to the exclusion of others and doesn't really care to hear what other people have to say; he plays alone for hours, although he likes to be in the same room with other people (usually adults), he has a hard time actually interacting with other children; is able to lose himself in the same activity and talk to himself about it outloud endlessly;
• fine motor delays: about 1 year delay; ambidextrious; hated to draw or color or do anything with his hands until he was about 4;
• sensory issues: doesn't like to get his hands sticky or dirty; prefers soft foods and liquids; picky eater; hoardes sweets; panics when he gets his hands dirty and wipes them on walls, counters, floors, etc.; loves showers, baths, water and would stay in them for hours;
• IQ: officially he is average (99 composite); verbal language is probably off the charts for his age; the 99 on the Weschler was after completing about 2/3 of the test and his averages on the K-Seals (Kaufman Survey of Early Academic and Language Skills) ranged from 95-101 after he finished about 1/2-2/3 of the test (the testers comment: Sam waas not interested in completing the measure and much encouragement was needed to maintain his level of performance. lol--that is the understatement of the decade. She had to bribe him with Star Wars stickers to get him to even sit down at one point. He was trying to get her to duel with pencils for anything that involved drawuing. The entire written portion of the Weshler had an X and a mark and that was it, I think) . These were given when he was 4. We've not done any further testing of this nature, but he has made significant strides in his ability to participate in these types of activities, so we may ask to have further testing done--or we may just wait until he's up for recert.
  

His "non" Aspergers characteristics:

• He has a keen sense of humor. Loves jokes and loves to laugh. Loves "pranks"
• He is very empathetic and compassionate, although not always at the time of his actions.
• His language is expressive and colorful and vibrant. Not monotone at all.
• He craves physical contact.
• He doesn't have significant gross motor delays.
• He doesn't have true "obsession" over any one specific topic. His varies from day to day.
• He is very social and outgoing when the situation warrants. Loves parties, crowds, school.

The official testing info:

• Gilliams Aspergers Quotient: Based on the assessment that I filled out at the time he was tested, he had a standard score of 88. His daycare provider gave him a standard score of 92. On both of our assessments, the key areas were his pragmatic skills and social interactions.
• Childhood Autism Rating Scale: 34, which qualified as Mild/Moderate

What does the average person see? They see a very talkative, imaginative, happy, slightly immature kiddo who has an insane vocabulary and a goofy sense of humor who has never met a stranger or a person who doesn't need to hear a story. That's fine by me. For now, that's exactly what I want them to see because that's exactly what Sam is. I've got no desire to change who he is. He's a remarkable child. The trick is going to be helping him navigate the choppy waters that lie just ahead of him--when it's not enough to just be cute and funny and talky. I'm okay with him being HIM, but I don't want him to be stigmatized or traumatized for doing something that is inappropriate with his peer group when he could have easily learned how to avoid doing that. So it's a fine line---how much to rein in and how much to let go. What is a quirk and what is a bad habit? That is the million dollar question and one that we'll be grappling with for the next several years. The good thing is, Sam loves questions. He asks about 432 of them a day, so questions are right up his alley. I'm sure, when all is said and done, he'll be the one who figures out most of the answers for us anyway.