Expert: James Michael Roan - 2/10/2006

Question
My son just turned 5.  He had a stroke 4 1/2 years ago due to untreated seizures (they were so slight, we hardly noticed them).  He has struggled with the seizures and finally we had a VNS placed in his small body last November.  

He is completely obsessed with certain things:  1. spinning everything and anything he gets his hands on.  2.  throwing...he has amazing aim.  3. certain things must be in very specific places and order.  4. he never forgets.  If he is allowed to "get away with something, not usually allowed" he will throw a tanthum until he is allowed to repeat the behavior (example..a friend allowed him to play with her telephone, now everytime he enters her home he demands the telephone).  

He absolutely refuses to potty train.  He just started speaking full sentences about 4 months ago, but he often repeats the sentences and the word order until he is happy with the structure. He does make full eye contact frequently and is very loving, but this was not always the case.  He did not make any eye contact or even look into a mirror until about 18 months of age.  He would not allow us to cuddle or hug him until about 3 years of age and even now it is on his terms.  If he wants a hug, he's great.  If he doesn't, he'll have no part of it.

We are seeing 2 different Neurologists for his seizure disorder, but whenever I mention his behavior (he's SO active), I'm told he's too young to diagnose anything (Autism, ADD, etc).  I feel like he is a very smart little boy (he can figure out anything with buttons and batteries).  He is learning his alphabet and numbers, but can't seem to understand that the letters go together to make a word.  

I'm sure I've given way more info than necessary, however if you have any additional questions, I would be more than happy to answer them.  I'm so tired of looking for an answer to all his problems.  I did forget to mention, he was adopted at 17 days of age from a third world country.  When I saw him at 7 days, he was a thriving baby.  By the time I got him (10 days later), he was malnurished and cried almost non-stop.

I'm desperate from any suggestions or advise you might have.  Thanks so much for your time.

Christine  

Answer
Hi Christine;

We'll get to the bottom of this. Firstly, you can accurately diagnosis autism from around 18 months with certainty. I suggest you download off the internet the Modified Checklist for Autism in Toddlers (M-CHAT) http://www.firstsigns.org/downloads/m-chat.PDF It was normed on 18,000 children in the UK and provides a risk estimate for autism. Also download the scoring instructions at http://www.firstsigns.org/downloads/m-chat_scoring.PDF If there is any risk noted then do two things:

1. If you live in the U.S., make a special education referral to the school district in which your child lives. They are responsible for the assessment of children 0-21 years of age, and if they qualify for special education, responsible for education and related therapies.

2. In addition to the special education referral, take the M-CHAT to the child's pediatrician and ask for a referral to a multidisciplinary team expert in this area. Again, if you live in the U.S., you can go to the autism unit at a university near you, or a Children's Hospital.

Most importantly for the short term, send me the results and we can talk about them. In autism you are really looking at social delays. The M-CHAT we ask you all the right questions.

Kind Regards,
James