University of Washington Study on Autism

Most of you may know, but if you don't, Jacob, our oldest, was diagnosed with high functioning autism two years ago. He also has had a diagnosis of severe ADHD since age 5. We always say, "If people don't believe in these diagnoses, come stay at our house for a day and then they will change their minds." We have had the opportunity to get him assessed multiple times by different agencies and feel like we are doing all we can to help Jacob. We go to national conferences each year to try and learn as much as we can. It is all helpful, but we have found that what we can do is try to get involved in research studies that are trying to find out better ways to treat and diagnose these different illnesses. Last year, Jacob and his brother Jonah (who doesn't have either diagnosis) did a research study at the UW Autism Center where they wanted to compare brothers, one who has autism and another who doesn't. One of the things they had to do was take blood, which wasn't fun for either one. We have now promised them they don't have to do that again. This year, we are involved in a couple more studies through different universities. On Friday, Rebecca, Jacob, and I went over to Children's Hospital and started a study where they want us to videotape 2 hours of different behaviors in the home or a "normal day" for Jacob. They want to see footage of when he is having a great day and when he is struggling through the day. He was willing to do this and got to sign his own consent form. We tried to make a special day of it. Anytime we pull him out of school and he gets to spend the day with both of us is a good day. We rode the ferry over, went to our appointment where he got to get blue doctor gloves and a mask, and the we went out to Johnny Rockets diner where he got to order an Oreo shake. We had fun and got to bring their video camera home. Once we have about 2 hours of footage, they will get it back and condense it down to about 6 minutes. Then, they will take all 8 subjects' footage in the condensed version and have all of us watch them and then rate the behaviors. The goal is to try and come up with an objective way of evaluating behavior for autism. It should be interesting. Anyway, here are some pictures of our day together. Jacob got to get his own badge at Children's Hospital, even though they don't normally give them out to kids under 12.

This was in the office prior to going into the appointment. He is always a little nervous but then warms up to the doctors right away. Since he is a very likeable child, everyone just loves his personality.

We did go to lunch afterwards and Jacob picked to sit at the bar so we could pick music at the juke box and watch them make the food. Great food, by the way.

Jacob wanted to take home the menu and put it on his wall, but I encouraged him to make his own menu and he got excited about that.

He got a kick out of the waiter making a half smiley face with the ketchup.

Jacob got a huge burger which he loved. He worked up an appetite.

For those of you who ride and know the ferry system, you know that you can miss the ferry by seconds. We drove down to the ferry, paid and we were the last car on the ferry. We are normally the ones that pull up right as they close the ferry gate in front of us, so this was a nice break for us.

All three of our kids are in another study next Friday through the U of W where they are going to do EEG scans on each child. They wanted some subjects with autism and some "typically" developing children--his brothers--so they can compare the brain activity between the two. They will also do some cognitive testing and IQ tests. We have explained it to all the kids and all they wanted to know was, "are they going to take blood?" We made sure we asked and the answer is no.

The last study that we are doing this year is at the University of Michigan in Lansing, MI. We met a researcher at an ADHD convention in October of '08 who was looking for children with autism who were around Jacob's age. They are going to fly Rebecca, myself and Jacob back for three days and do some testing with Jacob including an MRI scan. It is all very organized and they are all so excited to have us come. We are grateful to help and hope that we can learn as much as we can from this visit. We will get a picture of his brain and they will explain what they see. Jacob, of course, had to be on board with this before we agreed and he is gung ho. It will be an emotional trip for Rebecca and I because they day of the MRI, they have to test him without his ADHD medications. We have never gone a full day off medications and we know it may be difficult. This trip is in May over Memorial Day weekend. Anyway, so much to learn and try but we certainly have come a long way in the last 5 years. couldn't do any of this without the help and support of our family and friends. Now we know why God surrounds you with those who can give you what you need even when you don't know you need it. We will keep everyone updated. You never know, maybe someone else has information that we don't or vice versa. Have a great day and God bless.

Robb