Update on Ethan

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Ethan had a language evaluation yesterday, so the fluctuations in diagnosis continue, with little bits of clarity shinging through the thick layers of darkness that the evaluative community has shed on Ethan's status. See Adventures in Misdiagnosis for the story up to this point.

On language matters, this woman said he probably has some neurological reason for some of what he does and doesn't do. He clearly has some of the most obvious traits of autistic communication deficiencies, but he doesn't have all of them all the time. Based on what she saw today, which isn't the way he is all the time, he fits into the autistic category, but she doesn't know where he is on the spectrum. She thinks he has some of the basic skills there, but he finds it very hard to communicate. The problem is mainly in expressive language. Other elements of his language are much higher-functioning.

He seems to understand what people are saying, and he uses sentences in the right contexts enough to show that he is picking up what things mean. She says she'd support the neurologist's diagnosis of autism, though she's not sure he will remain within that diagnostic category. Many kids start out with an autistic diagnosis and then later move to high-functioning autism or Asperger's, but that doesn't mean the diagnosis was initially wrong. It just means that the diagnosis showed lower capabilities at first but further brain development and social maturing led to a less severe diagnosis at the later stage.

It's not clear to her if he just doesn't want to say something he knows he can say to get what he wants or if somehow he can't bring himself to communicate but wants to. She definitely thinks the cause is neurological, either way. She says he needs intensive language therapy if he's going to make any progress on this, and he might begin to progress to higher levels of the autistic spectrum with continued therapy, maybe even enough to leave the spectrum into what's considered normal, but it's too early to see how much progress he can make.

He was emotionally exhausted by the end of this session, because they were trying to force him to do things he finds very hard or maybe even can't do. He had a hard time doing anything but whining and rolling around on the floor by the end, and he fell asleep in the car, which he almost never does at lunch time. He didn't do any of that last time, even with all the frustrating fine motor stuff. If he does have this therapy, it's going to be very difficult for him, but it's probably the best chance he might have to learn to communicate in ways necessary for a more normal life.

She said this issue is similar to the sensory issues. There are weak connections in his brain when it comes to expressive communication, and there are signs that he occasionally uses those connections, but they need provoking through the right kind of stimulus and effort from him. She says he has a better structure to start with than many autistic kids, since he understands people, sometimes (but not often) uses sentences in the right contexts to try to communicate, and has these lucid moments of saying exactly the right thing for a situation when it's not just something he's repeating from an earlier time (usually when talking to no one in particular). He also interacts in some important ways and appreciates contact with people. The fact that those moments are more rare than they should be shows that there's a big problem, but the fact that he has them at all and as often as he does shows that there's something to work with.

So expressive language (and communication in general) and the sensory issues are definitely the main problems. If he's going to grow socially and with his fine motor skills, he'll need to grow in his sensory connections and his communicative issues anyway. I think the best way to describe him at this point is that he has autistic deficiencies in expressive communication and delays in fine motor development sensory integration, and social interaction. This woman thinks that's enough to justify the label of autism and not to call it high-functioning, at least in terms of expressive language, which is all she's qualified to judge (and all I'd be willing to grant her the ability to declare authoritatively). We'll see how the two women from last week put their report together with hers. It might be a few weeks before we hear anything else.

1 Comments

I have a son diagnosed with Asperger's Syndrome, but it should be noted that he has made enormous progress in the last year in social issues. He had a very difficult infancy, and we spent the first three years of his life finding food he could eat without throwing up. We were told he might be brain-damaged, but they were wrong. We were told he would be reading-delayed, but they were wrong about that too. So, I think I'm trying to tell you that you should take a diagnosis in this area with a grain of salt.

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