Tuesday, September 11, 2012

Evaluations/Diagnosis Part 1

I have been working on this post in draft and am finally going to post it. Sorry that it is a bit out of order. If I figure out how to move my blog posts around I will do that at a later date. But for now I'm still a newbie at this, so please forgive me

In April, after our pediatrician recommended further evaluation, I began calling places to try and schedule one. The major Autism school in our area had a wait list until November or December. The Autism clinic at our local children's hospital didn't have anything until September. While this wait time might  not seem like a lot, to me it seemed to be forever away. I was frustrated because everything I have read talks about the importance of early and intensive evaluation. If we were looking at more than a speech delay I wanted to make sure to get Jake all of the help possible. 6 months is a lot of time in the life of an 18month old. At this time he was still receiving just 1.5hrs of therapy a week (45min of speech and 45min with a teacher). If we had to wait until September to even get a diagnosis, I wasn't sure how long it would be before we would be able to increase services. Our AWESOME service coordinator called me to say he had found a clinic about an hour away that could get us in within 2 week. I said "SIGN us up!!" So May 17th became our "D" day.  

     The clinic sent some paperwork/checklists for me to fill out and send back ahead of time. My husband was able to take the day off from work and made the drive with us. When we got there Jakob charmed the pants off of all of the ladies in the waiting area, walking into all of the offices and giving his charming smile. The man doing the evaluation was a child psychologist and behavior specialist. I went into the appointment expecting him to do some work with Jakob and for him to try interacting with Jake. Instead he spent the time going over some of the paperwork I had filled out ahead of time and asking my husband and I questions to complete some additional checklist. The following instruments were used:
Child Behavior Checklist for 1 1/2 - 5
Vineland Adaptive Behavior Scale II

     I was surprised that he didn't attempt to engage Jake at all, though I guess he was observing him moving about the room as we talked. His results on the rating scales were a bit varied. In the CBCL he scored in the normal range on all items but Pervasive Dev. Problems, in which he was borderline. On the CARS-2 He scored a 27.5 which indicates Minimal Symptoms of Autism Spectrum Disorder (30 is typically the cut off for ASD). He showed red flags in several areas on the M-CHAT, and scored in the lower percentiles on the Vineland. I won't pretend to know what all of these mean, but the doctor went over them all in a general way. Basically he told us that he meets some, but not all, of the requirements for Autism.
     This is where he made my blood boil a bit. My husband asked what all of this meant, and what does he think of Jake. The doctor came out and said "He is definitely not Autistic" to which my husband breathed a sigh of relief - that is all he wanted to hear and he would have been happy walking out the door at that point. I probed further and asked what his diagnosis would be, pretty much pulling an answer out of him. He said he will be giving him a diagnosis of PDD-NOS. Hello! PDD-NOS IS an Autism Spectrum Disorder!! I asked him some leading questions to try and pull this out of him. To this point my husband was pretty much in denial of the possibility of Autism. He was blindsided when the doctor first mentioned the possibility of it at  Jake's 18 month well check. In his eyes we were dealing with a speech delay and that was it. Having this doctor come out and say flat out that he is not autistic didn't do anything to help my case. I had been researching everything ad nauseam so I understood that PDD-NOS is and ASD and agreed that Jake was showing many of the red flags. It made me angry that this doctor would make such a statement. If I hadn't educated myself beforehand we would have walked out blissfully ignorant, believing that Jake "definitely isn't Autistic". I felt that this was very irresponsible of the doctor. As parents we trust professionals to help us and our children, and to give us guidance. It doesn't help when doctors try to sugarcoat a situation or give false information.
     The next day I received a call from another local clinic saying that they had a cancellation and as a result had an opening the following week. Of course I jumped on that opportunity also. I will write about that evaluation in another post :)

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