This is the diagnosis given to Juliette by the Crystal Charity Ball Autism Project at Children's Hospital in Dallas yesterday. The center incorporates expertise of clinicians and researchers from UT Southwestern Medical Center, University of Texas Dallas and Children's Medical Center Dallas. Juliette was evaluated for over 2 hours by a team of psychiatrists/psychotherapists, and speech experts. Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is the diagnosis given when there are some symptoms present on the spectrum but not enough for it to be classified as autism. The evaluation was daunting but Juliette was such a trooper and handled it very very well. The evaluation began in a small room with a one-way mirror. It was a weird feeling knowing people were watching but yet you could not see them. There were 2 therapists in the room with us playing with Juliette with various toys, creating different scenarios in order to see Juliette's reactions to them and some pretend play. Juliette did great on most of these things but I could tell there were a few times that the therapists did not get what they were looking for from Juliette. For example, the first therapist uncovered some sort of mechanical bunny rabbit that hopped around like a real live bunny. This caught Juliette's attention right away and at the same time the second therapist began shooting bubbles through a bubble machine off to the side. Juliette should have noticed the bubbles with her peripheral vision and should have at least glanced over to look at them, even for a second, but she never saw them. She remained completely focused on the bunny. After about an hour and a half of playing they asked me to leave the room so that they can continue playing with Juliette and I can proceed with the parent interview portion of the evaluation. Once we were done we were given a 2 hour break so I had just enough time to take Juliette home, feed her a quick lunch and put her down for a nap. When I returned I met with all the doctors who took part in her evaluation and we discussed her PDD-NOS diagnosis and intervention.
As soon as I got home I sent an email to two of my friends who have children on the spectrum. One who has a son who had a similar diagnosis as Juliette and another who has a daughter that is much more further down the spectrum. Both said to me the same exact thing. PDD-NOS is a promising diagnosis and that most kids diagnosed with PDD-NOS, if they receive intense therapy and the correct services, can lose their diagnosis. PDD-NOS is the only diagnosis where you can "cure" autism.
The following are the symptoms they saw in Juliette broken down into 3 categories: social, communication and unusual behavior:
Social - impairment with eye to eye gaze, facial expression and body posture to regulate social interaction. She lacks initiation in play to seek shared enjoyment with other people.
Communication - Juliette is moderately delayed in speech. Although she is improving in speech everyday and talking a lot more, she does babble and uses jargon in between actual words to express herself. She also echoes, repeats words or phrases she hears on a daily basis. She also lacks in varied, spontaneous make-believe play.
Unusual Behaviors - Juliette used to flap her hands/arms when excited when she was younger. I haven't noticed this behavior lately but during the evaluation they noticed she likes to rub her fingers or flap them alot. She also likes to spin, usually she does this in her crib. She also likes to pull or twirl her hair.
So we definitely have our plates full with the amount of therapy Juliette will be getting from here on. With the support of EIS and her current therapists we should be good. I am just so grateful that I am able to stay home and not worry about juggling work and time off for her appointments. However, financially, with the out of pocket expenses we will incur, we'll have to tighten up our belts as insurance will not cover everything.
