Drug Study

Mr. Boo recently searched the Internet for help and support for Boo, came across a service of a local university to help families and children of ASD.  The outreach program helps steer families towards services and offer support. Mr. Boo contacted the school and we met with a liaison.  She was very helpful; had ideas for us to try, sent us the names of many services, and asked if we were interested in any of the studies the university was conducting.  We said sure. 

From that we are now involved in 3 studies:

One is a Google glass study which Boo has already participated in. It was one hour, earned him $25 dollars which he is planning to spend on Legos. 

Another study is a study that looks at how ASD kids process math. Boo will earn more money for Legos (which he is very excited about).

The last is a drug study which does not pay.  We will have to buy the legos. 

The study is double blind. Meaning the researchers and the participants don't know if which children get the medicine. It is researching the effects of a medicine on ASD participants to see if they talk more and have positive social changes.  Since the study is double blind we won't know if Boo recieved the "real thing" until we are done.

We started the process last week.  Boo was given a IQ test and we were ask a bunch questions, 3 1/2 hours worth, about Boo and how ASD has progressed during his life.  I was also ask to fill out 4 surveys for ASD children to measure the severity of the condition in the home.   We went back later for Boo to answer more questions relating to IQ.  He also got his blood drawn, an EKG, and a physical check-up, then his blood pressure reading while sitting and standing. 

All of this was intense for Boo.  The grad students, who all looked like kids to me (I'm in my 40's and these folks are clearly in their 20's) called Boo a "Citizen Scientist."  This made him feel really positive about his role.  He is even looking forward to the blood draw.  (That was last week, we'll see what happens when it needs to be drawn again.)

We also spoke to the lead researcher, a man in his 50's.  This was probably the best conversation we have ever had with someone about autism.  One of the grad students took Boo out of the room while the professor asked us questions.  Never have we spoken with someone who was so empathetic to our situation.  He confirmed our intuitions.  

We told him about the time we went to developmental pediatrician which was worse then useless.  He validated our feelings of this episode when he said, that the challenge with the ASD kids who are higher-functioning is that they slip through the cracks.  There is no one over seeing their care because more severe cases get needed attention, leaving the parents of more highly functioning kids responsible of all the care.

We also told him we switched schools from private to public.  A choice, that in my husband's words, "gave him a whole new set of gray hairs."  The Doctor said that autistic kids are usually better served in the public school.  We came out of that meeting breathing a big sigh of relief.  Thank you Dr._______. 

For our part in the drug trial, we have to administer a vapor up the nose everyday which will carry the meds or a placebo.  At the end of the study they will let us know which one Boo received.  

It is a 4 week study with a choice to continue for an additional 4 weeks if we choose.  

I will post regularly over then next 4-8 weeks about any changes we see in Boo's behavior.