Embarking on Autism

I've been told that some of my son's behaviors correspond with autism.  Because of this I asked many doctors if he should be evaluated.  The answer was always "No, your son does NOT have autism."  They always noted that he was too social, loving, and easy going.  I was a little disappointed that they didn't want to evaluate him.  I thought that perhaps some of therapies or services available for autistic kids might be helpful for our son too.  However all of the doctors seemed to agree we did not have autism.

Here is a list of some of the characteristics that seemed to correlate with autism:

• Speech Delay
• Echolalia (He likes to quote movies and books.  He often repeats the script of whatever TV show he watched that day)
• Social Problems (He tries to hug everyone and has a hard time with conversations)
• He Self Stimulates (Usually By Humming)
• Dosent always make eye contact while talking
• Has a hard time following directions ( Doesn't seem to understand when I point to something more then an arms length away)

Eventually I stopped asking about autism.  Just when I'd put it out of my mind his doctors started to suggest having him evaluated.  Our new geneticist told us that many kids with PTEN mutations also have autism.  Since deletions are so rare there is not enough information to rule out a strong correlation with deletions as well.  I was shocked, nervous, and excited.  He recommended taking Noah to facility called "Children With Special Healthcare Needs" for an evaluation.  I had to wait over two months to get an appointment.

I had been told that the evaluation would include examining how our son plays with toys.  I told Noah we were going to go play toys with some nice doctors.  When we got to our appointment they pulled us into a doctors office with no toys.  Noah started to protest.  He wanted to go back to the waiting room where there were lots of toys.  The doctor started asking me about Noah's PTEN deletion and I started to explain his condition.  Noah was very irritated and started whining and pulling on my arm.  He was expecting toys.  Then just as quickly as so many others had diagnosed him autism free, he was diagnosed. Autism/PDD.

This was the full extent of the evaluation:

Doctor: "Hi Noah"
Noah: "Hi"
Doctor: "Do you go to school"
Noah: "Yeeesss"
Doctor: "What do you learn at school"
Noah: "Opposites.... Mom I want to go play outside"
Doctor: "You want to go outside and play with your Aunt?"
Noah "Yes!"
Doctor:  "Okay go outside and play"
Noah:  "OKAY" (Happily marches out of the room)

Diagnosis = Autism PPD

I'm not sure how to feel about this not so thorough evaluation.  I hate to diagnose my son with something he does not have.  On the other hand if there is some type of autism treatment that would help.... that's great!

I asked the doctor what to do next.  He said that this was not something you go get treatment for, its just something you work on in your daily life.  He suggested:

•  Work on his conversation skills,
•  practice eye contact, 
• practice socializing, 
• give him plenty of opportunities to socialize
• coach him on what to say.  
• Inform the school of this diagnosis so they can include social aspects in his next IEP.

Minus the IEP recommendation we were working on these skills already.  The doctor did give me some tips to make the work less frustrating.  He explained that when I ask Noah to tell his Dad who we saw at the grocery while I was expecting him to say "Grandma and Grandpa" Noah would be thinking of all the people at the grocery store.  He might sit silently thinking about the lady with the broken shopping cart, the teenager with purple hair, the daddy holding a small baby, the man with a foreign accent, etc.  With all this information he would be too overwhelmed to tell his dad anything.  He suggested that I tell Noah exactly what to say.  This will help him learn to filter the information for himself.

Despite the lack of information offered by the doctor I do believe there are treatments for autism.  I've heard of things like ABA and Son-Rise Methods.  I don't know what they are, but I know there is something out there.

Once again I feel disappointed in the medical industry.  It seems that once again I am embarking on a unguided expedition.  They give you a diagnosis, and no instructions on how to proceed.  It will interesting to figure out where this will take us.  I hope it turns out to be more then just a label to stick on an IEP.