Tuesday, June 29, 2010

Applying the Autism Pizza to My Kids

On the sidebar of this blog, I have provided "The Autism Pizza". Using that as a model, I've gone through and determined how Simon and Rachel fit, following the example set by another autism mom. I did this on Facebook in a note, but I think it'll make a good post, so I'm putting them both on here.

First, Simon:
Let's start with the crust -- lack of social interaction. When we first started about 15-16 months ago, Simon had ABSOLUTELY no interest in anyone around him when it came to anything other than sharing affection (Simon has always been quite cuddly when he's in the mood), and that was very limited as to who he would show that side (usually just me, his Dad and his grandmother if he had the opportunity to reacquaint himself with her -- they don't live nearby and we don't see grandparents as often as we would like). Eye contact was VERY limited almost to the point of being nonexistent. And he certainly did NOT know how to follow a point or successfully communicate what he wanted or needed -- it was usually guesswork on the part of everyone around him. Since then, we aren't quite in that spot -- we do get frequent eye contact, but it doesn't last for very long. He does share his interest, mainly when he is requesting something from us. Sometimes we have to force the eye contact -- bring our own eyes into his face so that he has no choice but to look at us, but he will maintain that eye contact for brief periods. He's come to realize that on many occasions, if he wants something, this is necessary and will comply. He still doesn't point, but he is beginning to gesture, the favorite way is actually bring you the item that he is interested in. But he definitely has CRUST.

Now we'll move on to the sauce -- when we started, there was MINIMAL communication. He had maybe 5-10 words that he would use effectively. He didn't sign. Guesswork was how we determined what he wanted from us. However, he began babbling on schedule. It just didn't progress much further. The biggest difference is that he learned to "babble conversationally". What I mean is that he would put the inflections of a conversation within his babble with the changes in tone and pitch. It would sound like he was asking a question, even though there were no actual words. As time has passed, he became EXTREMELY echolailic -- we would say something to him and he would repeat it almost exactly. At first it was a game. Then it became a true way of communication. As I learned how to help him, we started to offer him limited choices and force him to tell us what he wanted. We learned to mix up the order of what we offered since he got into the pattern of repeating the last item. And eventually, he started picking up on communication. He's still not exactly conversational, but he is getting much much better. As for make-believe play, we're not even close. So, yes, we have the sauce.

Finally, the cheese -- stereotypical activities and interests. MOST DEFINITELY. When we started, we were in awe that our child could sit with a toy and play for upwards of 20-30 minutes without needing adult intervention. What a smart child we have, exploring a toy for so long!!!!! Then we started recognizing the repetitive nature of this play. Pushing buttons, mainly, to get the same result OVER and OVER again. He was stimming. For LONG periods of time. This is something that, if left to himself, comes right back. We currently let him stim for periods since it is such a comfort to him, but we try to limit that play. We have removed batteries from many of his toys and try to force him to play with things more appropriately. But we DEFINITELY have some cheese.

So, it's no surprise that his diagnosis is classic autism. He has all the components. Will this diagnosis change over time? I really don't know. I'm not sure if that's really the nature of this condition or if the shape will change as he grows. Either way, we are doing what we can to help him.

Next, Rachel:
Putting this together for Rachel is much harder for me. I'm not sure if it's lingering issues of my own denial or if she is an example of someone who is in the process of changing clinical diagnosis. For her, things have changed so much in the last 10 months. I think I'm going to really have to do this in 2 ways -- where she started for each component and where she is now. But, it was an interesting exercise doing this for Simon and now we'll see what we come up with for Rachel.

All right -- let's start with the crust. Social Interaction. 15-16 months ago, if it wasn't Mommy, she just simply wasn't interested. And even with me, there was little to no eye contact, and almost no smiles or joy. She never pointed or did anything to express what she wanted, unless it was throwing a tantrum. Now we have plenty of eye contact and she will bring me things to share with her. Joint attention is no longer something that's rare -- we get that all the time. However, she isn't exactly what I would call a snuggly child (Simon is more like that), but at the end of the year she started pointing at pictures in a book and labeling them. She still won't follow or initiate a distal point. She still doesn't seek out interactions with her peers (mainly seen with her brothers), but once someone can get her to interact with her, she will keep it going for brief periods of time. Does she have crust? I think I have to say yes, mainly because others have to initiate much of this.

Time for the sauce. This is probably the most difficult of the 3 to determine for her. When our journey began, she had a VERY limited vocabulary, especially for her age. She got to that point (about 20-30 words) and then just didn't progress any further. The intervention started. Shortly before initiating intensive ABA, all of a sudden, something seemed to click. I'm not sure if this was something that came from a newly formed connection that she had made or if it was one of the many interventions she had been exposed to (leaning toward the latter, specifically More Than Words) she started to seeing that "communication" would open a whole new world to her. We started playing "The Opposite Game" (I'd say "Up.....Down.....Up....Down" or similar and she would anticipate) and she'd request specific opposite pairs. Then she learned to make choices. She just began ESY, and when I went to pick her up from school yesterday, after the first day of school, they kept telling me what a pleasure she is to work with and expressing how verbal she is (probably nearing 500 words at this point). The only thing in this sauce definition that she is lacking is she still cannot do imaginative play without having it forced on her (for example, in an ABA task, if she's told to feed a doll a bottle, she'll copy the motion, but there is no comprehension of what they are trying to get her to do). So, for now I'll say she has the sauce. But it's not on very heavy.

Finally, the cheese. This is the easy one for her. She LIVES on routine. If things stray even the slightest, she gets very tense and will say things over and over again until you repeat them in the exact way she needs to hear them. Things need to be predictable. August is going to be interesting for her -- we'll be out of town for a week or so which will probably be easier, but when we're home, she's not going to understand why she's not going on the bus and headed for school. It's fine for a few days, but 2-3 weeks is going to make her VERY uncomfortable. She doesn't "stim" in the same way as her brother, but she will put puzzles together in the same order every time. If I try to break that cycle and hand her a different piece (creating the "wrong" order), she will reach over me and grab the "correct" piece rather than putting in the one I gave her. If I hide the other pieces, depending on her mood, she will often try to walk away or throw a tantrum. Occasionally, she will take the piece if I can convince her, but that takes a significant effort. So, yes, she has plenty of cheese.

So, once again, we have classic autism, which is her official diagnosis. That sauce bothers me though. We'll have to see if her actual diagnosis changes to Aspergers over the next few years or if I'm just not assigning that category of issues correctly. And who knows how else things may change over the years. But, for now, using this model, I agree with the diagnosis she's been assigned.

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