Worry

We've been watching a series on PBS this past week about Autism. Last night, while we listened to B cry in his room, it focused on adults with autism. What becomes of all these kids that we hear so much about? When they are "no longer cute and harmless". Let's just say it was more than a little depressing. They showed a 21 year old man who is about to lose support services now that he is an adult. He has no functional language... the closest thing his family has to conversations with him is a back-and-forth exchange of movie quotes. And the disheartening thing was that they showed this same guy at about the same age that B is now. If anything, he seemed to understand more than our little guy does. Of course we don't know what type of treatment he received or anything else about his level of impairment but nevertheless, it made us worry.

So then today, we went for his evaluation. And I wish I could say that it made us feel better. Unfortunately, it was a harsh dose of reality and now we are really worried. Scared. Petrified. Basically rendered speechless on the ride home.

We won't get their report for 4-6 weeks but I can give some highlights. From their assessment, B functions at about an 18-month old level and only 3 months for language. Less than half his age overall. Gulp. I hate to admit it, but 18 months does feel about right when I think about his real age relative to other kids.

B was in another room from us for all of the testing (which I didn't expect). We could hear him giggling and crying a couple of times for brief periods. While the psychologist worked with him, hubby and I were interviewed and filling out some standardized assessments. As we answered "no" more often than not, we were reminded of all the things he does not do like other kids. So many things.

He did remarkably well being in an unfamiliar place for an extended period of time. It did wear him out - he passed out cold in his stroller during the last half hour. Who can blame him? He is becoming somewhat of a pro at all this testing though.

And now to the "results". We really liked the psychologist overall.  She made a lot of good points like the fact that  it's difficult to truly test kids with autism because of their deficit in cognitive skills. And it's hard to know what they can do vs. what they will do. And she said that we have a great kid with a great demeanor and an infectious laugh. So she's also perceptive (ha ha).

But boy do we have our work cut out for us! His language just isn't clicking. Whereas we thought he had made huge strides in receptive language, she thought he was only able to understand via physical clues and intonation - not by listening to the words themselves. He did not respond to his name for her or to commands like "no" or "stop". He did surprise her by some of the things he could do like sorting, putting pennies in a jar, doing puzzles. Unfortunately, all of these are programs that he has been working on in ABA. So while it's great that he is retaining what he's learning, it's not great that he is having to be explicitly taught each of these things.

We were praised for getting him such intense help so early on and she definitely emphasized that he is still so young to know how he's going to develop. With regards to IQ or any additional diagnosis of mental retardation (renamed to a more politically correct intellectually deficient), it's impossible to assess until he's older. I think she said at least age 5. She also said that he is learning steadily rather than falling further behind.

Tough stuff to hear. Next week, we'll see how he measures up through the assessments and analysis of our ABA provider. But, as hubby pointed out, today's was the most objective opinion.

So we hold on. We keep going, knowing that we are doing all that we can. And that he is still our sweet boy who impresses everyone he meets with his happiness and demeanor. And we hope against hope that he turns that corner... that it just starts to click as it does roughly half the time with such intense therapy. And we worry...and worry. And then worry some more.