Expert: James Michael Roan - 10/15/2006

Question
I can't believe that it is only several days since I initially emailed you.

Since that time, I contacted our local hospital  child developmental center and was told that the first open appt was for Feb 2007 but they would put us on a waiting/cancellation list.  A day or two later, we were contacted with a cancellation and had Michael examined yesterday.

The doctor is a pedi neuro /developmental disorder. Their unit does many of the exams for the local board of eds in the area ( along with a second university center who said they had a 6 months wait for an initial appt.  I'm on their wait list also)

in any event, his opinion is that Michael has mild Aspergers and/or HFA.  (Things were going a bit quickly after the exam so I'm not sure if he truely makes a distinction between the two.  I'll have to wait to see the report)  He did think that there was a prominent behavior component and wants him to be seen by a behavioral psychologist, specifically for "oppositional behavior" (I thinks that what he called it)

he also recommended that I contact the local Bd of Ed to have him eval for the Special Preschool program.  I spoke with them already and will be making an appt with the child study team on Monday.  He did mention looking for a "High functioning preschool" in the event that the board only approves a 1/2 for him.  How do you go about finding one in New Jersey?

The doctor did point out that his motor skills were not all on target as we thought (he can't use scissors, although I never really let him use them so I don't know if he didn't know how or he couldnt).  He recommended some PT/OT and some speech.  I never really noticed but once it is mentioned to you, you see different things (like Michael tends to talk TO YOU, not really WITH you.)

While the child study eval is pending, I thought that we should still seek out a second opinion just to make sure but the more I read on Aspergers, PDD NOS (predominately because of your email) there are alot of signs which we probably should have picked up sooner instead of writing it off to him being somewhat clumsy because of his long legs or that he was a "quirky" kid.

Is it important to get a difinitive answer betweer HFA vs. Aspergers?  Does it matter as far as treatment is concerned?  or is there so much of an overlap that for practical purposes, it doesn't matter?

Thank you for your response - it, at the very least, had me researching a few issues before our visit and helped enormously so that I wasn't hearing these terms for the first time at the hospital yesterday.

sharon


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Followup To

Question -
I'm not exactly sure where to start.  Michael turned 4 this August.  For 2 years, I've always told the pediatrician that I thought he was ADHD but I'm starting to think that there is more to it.

We were finally able to potty train him in June so he started nursery school 3 half days a week in July.  There were very few kids over the summer.  In September, he started 3 full days (9-3:30) since out Kindergarten is full time.  By the third week, the teacher spoke to me about possibly getting him evaluated, either for ADHD or Autism.  He has unprovoked outbursts is class and then it's like nothing ever happened.  Recently, he has been doing this more often at home with us and our 8yo son.  He's starting to throw his toys, especially when he's frustrated.

He cannot sit in school for any length of time during group interactions (ie 10 min TOPS) and even if he is sitting in the chair, he is constantly moving and annoys the children sitting next to him.  We've cut back to 3 half days at school again because he just couldn't stay that long, esp during rest/nap time.  if he becomes really bothersome, one teacher will take him for a walk on the campus, go into a different office, etc, until he calms down.

There are several things that he can do for extended periods of time.  He can play with his Thomas trains for hours.  The track layouts that he puts together by himself put my 8yo to shame.  The other thing he can do is draw/color -- for hours--I go thru a package of copy paper every 10 days.  the detail that he puts into the pictures is actually somewhat frightening.  He makes up his own "Thomas movies" and draws different scenes from the movie on each page.  he makes up hiss own trainss with namess, face details, colors, etc.

Neurologically, his development was pretty normal.  He's VERY verbal, Michael was speaking in complete sentences at 2 1/2 the latest.  He's very tall for his age, 46 inches at age 4.  When you combine the height with his verbal skills, people think he's in 1st grade.  he knows his letters( most of them), numbers although it's hard to get him to do them - only if HE wants to.  Even in school, he won't sit down for them to evaluate him but he'll shout out the answers from where ever he is standing.

He was always somewhat sensitive to really bright lights/sun light.  Doesn't care for my hair dryer and CAN"T STAND if the car radio is any louder than a conversational tone.  (He tells me I drive to fast, btu that's another story.)

His fine motor skill are beyond where they should be (the things he can make with the really tiny legos leave you shaking your head.)  He has a tendancy to line up things - his trains, VCR tapes, DVDs, not like dominos but in a straight line or next to each other.

I've never noticed hand flapping except in one circumstance - if you interrupt him while he is talking, he starts yelling "I got to finish, I got to finish" and flaps/shakes his hands.

Recently, after talking to his teacher, the pedi tried him on a course of Adderall.  5mgs a day X 1week (I thought it made him somewhat irritable).  One day on 10mg actually made him violent.  I stopped it  and the next day at school, they said he was gold - to the point that he actually sat for the entire time in group!

The child development centers in the area have a 4 to 6 month back log for  1st appt/evaluations.  I'm not sure I should be waiting that long - esp since he should be starting school in Sept.

Does it sound like PPD?  Should we wait for the appt , go to a pedi neuro?  Do we contact the Board of Ed NOW for eval before the school year?  I'm not exactly sure where to start.

Answer -
Hi Sharon;

This sort of behavior does ring of high functioning autism (HFA/PDD-NOS/Asperger's Syndrome). The inattention in HFA is usually executive dysfunction that gets misdiagnosed as ADHD. In autism, we are most concerned about social awareness, social development, and social interactions. I suggest you download off the internet the Modified Checklist for Autism in Toddlers (M-CHAT) http://www.firstsigns.org/downloads/m-chat.PDF. 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 son 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 your son'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.

It's absolutely essential to get the right diagnosis and appropriate services going right away. Write me back with the results of the M-CHAT and we can go from there.

Kind regards,
James  

Answer
Hi Sharon;

Congratulations. You've accomplished a lot in a very short time. Asperger's Syndrome (AS), high functioning autism (HFA), and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) are all the same thing. Your son's primary delay is social and a literal (concrete) thinking style. The former impedes language and social development and the latter causes explosive behavior and sometimes rage. Other features are motor apraxia/dyspraxia, which is an inability to carry out "fluid" sequences of motor actions such as are required for peddling a tricycle, writing, and throwing and catching a ball. It can affect some motor areas and not others. It can affect the production of speech. Another feature is some level of executive dysfunction, which results in disorganization and planning problems. These delays look like ADD or ADHD but they are not.

I tell you all this because his evaluation results may confuse you. They are likely to give additional diagnoses based on the above to include ADD/ADHD Oppositional Defiant Disorder (ODD), Obsessive-Compulsive Disorder (OCD), and so on. Don't be confused, it's his AS that's the cause of these behaviors.

Be on the strictest look out when he enters mainstream school. He may get bullied and will struggle with the social pressures. As a result, he may develop anxiety and eventually depression. Once he becomes eligible for special education, you can have your school's psychologist test for this.

I'm glad all is going well. A full day preschool program may be too much for him. His primary area of service should be social language and social thinking therapy. Quality not quantity.

Kind Regards,
James