December 17, 2010

This morning I spent an hour on the phone finishing up the interview portion of our autism study - questionnaires for each of the kids.  Then this afternoon one of the doctors called to give us the major points of the evaluation, which we will receive in writing in January.

First she hit the positives, saying that Morgan was much more willing than average to work and perform the tasks, which was surprising to me since he certainly didn't seem into it in my mind!  She said they really enjoyed him and what a sweet kid he is, and all remarked on how good our whole family is with him and how loving and kind we all were with each other.  To be honest, I wasn't sure if she was just saying that, but it was nice to hear just the same.  I was somewhat surprised at the compliment and responded that we all get used to and learn to deal with what we're given.  She replied that actually, that's not really true.

For the scores - not so great but not surprising.  His verbal age equivalent is about 2.5 and non-verbal about 5.  They were not able to give an IQ test because he could not complete the one that was appropriate for his age.  I asked about this because we are trying to apply for state services, which are meant for persons with an IQ under 70.  She said she would include in the report what they use as a proxy instead, which is average functional age level divided by chronological age, which will put us well under the threshold.  (We plan to include this evaluation with our application).

The report will also include recommendations for his therapies/learning plan, most of which sounded like they are already being done (using pictures instead of words, encouraging social interactions, that kind of thing).  I asked what she thought about the fact that I didn't think medication was necessary at this time, and she said she totally agreed with me.

I asked how to stay in touch with the results of the study.  She says it's a nationwide study called Simons Simplex and she'll send me web site information to keep up with it.  Here's a little more info: https://sfari.org/simons-simplex-collection. The data collection has been underway for about 5 years and is wrapping up April 1, so we're actually on the tail end and won't have to wait as long as the first families to see what comes of it.

We chatted a bit after and I noted that I thought our family made an interesting genetic study.  She agreed, but for a different reason than I was thinking - she said it was very unusual to see a family with as many kids as we have with only one of them having autism.  So that was interesting to note.

I'm very proud of our family for participating in this study, and I am hopeful that the results will be a step towards a cure or at least an improved treatment.