Pervasive Developmental Disorder – Almost Specified

So this week I got the best phone call ever.

Chandler is currently going through reevaluation by the school psychologist Dr. Guy, as I will call him, as it had been three years since his last formal evaluation and the state believes it is time. Dr. Guy did the testing over a few days and in the middle, called me to check in and ask some questions and see what kind of things I wanted him to look for while he was at work on my boy.

We talked for a while and he described what he had seen so far. (I usually don’t tell that I have a background in mental health or that we are doing biomed or anything of much at all so as not to contaminate the process.) I could tell that he had gotten a pretty good handle on who Chandler was (you can always tell who ‘gets’ your kid and who doesn’t) and I asked him for a few specific things that might help me gauge his long term progress over the years.

Then this part of the conversation happened:

Dr. Guy: Well your son is autistic, but he doesn't have autism.

Me: Explain that to me.

Dr. Guy: Well there is another diagnosis called Pervasive Developmental Disorder-Not Otherwise Specified that... blah blah blah... (I have no idea what he said after that because my heart jumped into the air and I was trying not to burst into tears on the phone)

Me: So you think he has PDD?

Dr. Guy: Yes. While he has problems with speech and receptive language and socialization, I don't see any of the behavioral issues, stims, problems with transitions... blah blah blah... again could not hear him because all I could think was, "Did he really just say that? Don't get too excited because he might not really have said that."

Me: So if you walked into the class room and didn't know he had ever had any diagnosis, you would pick him out as a child with PDD?

Dr. Guy: (Now being very nice and trying to explain to me in very basic terms because clearly I was not understanding him as I kept asking him the same simple question over and over). Yes. Have you been in the autism class and gotten a chance to see some of the other children? They are very different from Chandler, much lower functioning. Have you noticed how they do things like _________? That is more of what true autism looks like.

Me: BAAAWWWAAAAAWWWWWWW!!!!!

Dr. Guy: Ma'am?

I explained that when we started with Chandler, he didn’t make eye contact or answer to his name, and that he was a stimming machine, flapping and spinning and toe walking and walking in positions that I could not do and hold my balance and turning the big wheel upside down to spin the tires and spinning the hot wheels car tires and watching the spinning fans. Chandler’s first eval, which was 6 months after we started therapy and biomed and after he was making eye contact and answering to his name, put him at moderate to severe autism.

Then he understood why I was so emotional.

When I asked about what specific stims he was seeing, he replied that he hadn’t seen any at that point. I told him that he still had one significant one, but I didn't tell him what it was, so see if he could see it as he continued the eval.

He never saw it, and then I realized that I had not seen it in a while either.

Chandler’s last SIB was that when he gets too frustrated, or even too frenzied (sometimes our spontaneous dance parties in Mommy’s office get a little crazy) he bites down on the first two fingers on his right hand. Really hard. His little fingers have big welts on them and I can always tell what kind of a day he has had when he was not with me by looking at his fingers to see how swollen they were.

I had not checked them in a while (he just has not been getting that upset lately), and when I looked at them, they were almost completely healed! The welts are gone, the callouses are gone and the skin is soft. It looks like it has been many weeks since he has bitten himself.

Gone, Gone, Gone!!

“Ginger, does your son have any self-injurious behavior?”

“Why, no. He does not do that any more. That was so 2007. Now his two fingers are virtually indistinguishable from their peers”.

I wanted to write about this right away, but thought better of it as the poor man had not even finished the testing, which turned out to be wise because, after talking with Chandler’s teacher, she pointed out a few subtle stims that he still has (damn that woman, if she wasn’t so “perceptive” and “right” and such a “great teacher” and so “completely invested in my child”, I would give her a piece of my mind, boy howdy).

Dr. Guy (also impressed with him as he calls families on his weekends to work on their kids assessments, who does that?) settled on a formal diagnosis of:

299.0 Autistic Disorder (Rule Out Pervasive Developmental Disorder, Not Otherwise Specified)
315.32 Mixed Receptive-Expressive Language Disorder.

He also did an intelligence assessment that showed, big surprise, a 40 point gap between verbal and non-verbal IQ.

He also noted that Chandler had no significant behavioral issues. So now we are down to just dealing with the talking part.

So I know this isn’t formally loosing his diagnosis yet, but I am still really excited about it because his first impression was that he didn’t have ‘autism’ and because three years ago the psychologist who tried to do an IQ assessment gave up because Chandler would not interact with him.

I am going to stay on top of this and when the last few little behavioral quirks are gone, and he firmly moves into PDD land, with the approval and agreement of his crack team of specialists, I will shout it from the top of someplace very, very high.

So stay tuned.

Now let’s all take a minute to look at my beautiful baby:



At chelation last week Webster went to take Chandler to get a sticker out of the sticker bucket while I talked to the doctor. Apparently we talked too long because Webster gave Chandler 46 stickers. A bullet could not have penetrated that shield of stickers.