Kennedy Krieger Testing

Yes, I have another post for today. I dropped Zak off at daycare and then headed to Kennedy Krieger with Ryder for his formal Autism testing at 1pm. We got there and I had to sign some paperwork and then the person who would be doing the test came in to introduce herself. We then went into one of the testing rooms. There were cameras set up all over the place which I knew about, but it still felt a little awkward being video taped.

She first started with The Mullen test which was basically asking Ryder to do various activities while sitting at a table. Ryder is used to many of the tasks she asked him to do since he has had developmental testing before. Also, many of the tasks she did with him are the skills that his current therapists are working in with him. Sometimes I feel like the tests they use are not always 100% accurate since they are testing on skills that are being "taught" to him during every therapy session he has each week. She did ask him to do somethings he had never been tested on such as picking out objects that match (showing him a picture of 3 things and asking him which 2 match or which 1 is different), pretend play things (having a birthday party for a baby doll and asking him to make a cake, put candles on, sing and so on), and asking him more in-depth questions than he is used to (What do you do when you are tired/hungry/thirsty?, show him a fork and ask him What do you do with this?). After that part of the testing was over she started into a play observation section.

Another researcher came in with a hand-held video camera for this portion. For this part of the test she put lots of toys on the floor and just observed how Ryder played with them. He, of course, was attached to the balls and cars even though there were TONS of toys available to him. Then she asked me to interact with him while playing with the various toys and try to get him to pay attention to some of the other toys. She then took over and started to direct his play to certain toys and initiated lots of pretend play.

The testing was very in-depth so I can't recall everything she did with him. Once it was all done she left the room for a few minutes to "score" the testing. Then she came back in the room to go over the results with me. She said according to the testing today he is not on the Autism Spectrum which is a big relief. I brought up my concern about how accurate the testing is since he is very social with adults and interacts and speaks with them without too many issues and the testing was done 1-on-1 with an adult which is when he performs the best. She then explained that for children under the age of 5 they only observe the interaction during the specific skills with an adult. Since his issues mainly arise when he is around other children he is not showing to be in the spectrum right now. She then said that children over 5 years old they add in a portion to observe the child with other children. She recommends that at age 5 if Ryder is still showing the "autistic tendencies" while around other children we should have him re-tested. She said it is very possible that he might, at that point in time, test as being on the spectrum. Only time will tell....

At the end of our appointment I did sign some more paperwork to allow them to send these test results to the doctor at Kennedy Krieger who is seeing Ryder. This way she can see all of the results and decide what the next step will be since she feels that he also has something else going on other than the Klinefelter's Syndrome. I will update once I hear anything back from her.

On a slightly different topic...I heard from the genetic counselor who works with Ryder. She said they received the images from Ryder's 12 month MRI and had their radiologist review them and make a report. This report showed microcephaly (small head, which we knew) and low levels of myelination (thought to be from prematurity). The 24 month MRI shows better myelination, microcephaly, and the lesions. This means the lesions were not present at 12 months. The thought at the moment is that Ryder had a stroke sometime between 12-24 months which caused the lesions on his brain. The genetic counselor is going to speak with the geneticist and let me know what the next step will be, but probably we will be making an appointment with a neurologist. I will update once I hear more about this also.