Expert: James Michael Roan - 4/16/2008

Question
Hi James,
I apologize in advance for this very lengthy description and question, but I wanted to provide enough information for you to get a good picture.  

My son will be 4 in early May.  He speaks very well for his age, articulates clearly, uses pronouns and tense properly, attends preschool 3 days a week, has friends at school and in the neighborhood, and does a TON of imaginary play, including playing dressup superheroes, riding his tricycle as an ambulance to "rescue" things, pretending a salt shaker is a spaceship, playing with cars, feeding or doctoring his stuffed animals, etc.  

He makes what appears to be normal eye contact.  He's conversant with us and with strangers, looks everyone in the eye and comes up with his own thoughts and questions. He shares his thoughts and ideas, looks to us for approval and input, asks tons of questions, points things out to us when he spots them, understands humor, and tries to get us to laugh. I think he avoids eye contact sometimes, but that's usually when he's "in trouble" for something -- in those moments, I have difficulty getting him to look me in the eye, even if I'm on his level right in front of him.

He remembers absolutely everything, loves music of all types and can identify songs after just a few notes.  (He even remembers which cd a given song is on - will describe it as the blue cd with circles on it - and then will tell you he thinks it's #6 on that cd.)  He enjoys playing games and word games like the "animal guessing game", rhyming game, and naming opposites.  

He is very loving, cuddly and silly. He loves being held, seeks out snuggles, and at night, tries to "con" us into hanging out in his room to snuggle with him.  He asks a million questions and is creative and manipulative to get us to stay.  He loves his extended family, plays with his cousins, asks about his aunts/uncles when they're not around, and he carries on conversations on the phone when they call.

However, since he was about 6 months old, he has had extra motor movements -- beginning with what we called "motor cycle hands" (like revving its engine) as early as 6 months -- which developed into arm flapping from the wrist at his sides (not near his face).  My concern with the flapping early on was dismissed as "lots of infants do that", but it has persisted in him, so it now looks more abnormal.  We always treated it sort of just as that thing he does when he's excited, and many people (including us) probably thought it was cute.  Occasionally, it is accompanied by rocking or sort of kicking his feet if he's sitting with his legs outstretched.  He does it when he's really excited about something, finds something hilarious (ie: in Backyardigans), or when he's examining his work and is really "proud" (building, puzzles, drawing pictures, checking out a new toy when he's just figured out how to "do" it, etc.) In the last 6 months, he's also taken to sort of jumping around in place, sometimes with grimacing.  

He also toe-walks about 50% of the time, but he drops to his flat fee on queue.  He walks flat-footed more and more of the time lately.  I notice he goes on toes when he's distracted and when on the hardwood floor without shoes.  He has inserts in his shoes to help with this.

Some background: he had only 30 words at his 2nd birthday, but his understanding, comprehension, pointing and identifying objects was all normal at that time, so his pediatrician was only concerned that he "progress" over the next few weeks.  She indicated that he should learn 4 - 6 new words per week, and I was amazed that he did. He has not stopped talking since.  By 2 years and 4 months, he was singing many of the songs we'd always sung to him - Twinkle Twinkle, Happy Birthday, Jingle Bells, Itsy Bitsy Spider, etc.  He also learned a few abnormal ones like "Oh, Beautiful..." (that's what he calls it) and Take Me out to the ball game.

He walked by 13 months, built puzzles by 17 months, identified all his letters by 2 years, etc.  By all accounts, his development seemed normal.  But when he walked at 13 months, he hated walking barefoot on the grass -- would stop cold at the end of the sidewalk -- and walked on toes on the hardwood floors.  He went through a period when he hated getting a haircut (screamed bloody murder) and STILL hates showers, but he loves the bath and swimming.  I can tell that haircuts and the dentist are uncomfortable for him, but he's a big boy and gets through without tears.  He's learning to put his face under the water but is a bit reluctant and hairwashing can be a struggle but he manages to get through it.

He also sometimes repeats things -- while he's playing, he may do commentary of what he's doing, sometimes repeating one phrase of his commentary several times.  Or if you ask him a question when he's really not focused or looking at you when you ask it, he'll repeat the question before answering.  Or, for example, if he's going to get his jacket because we're going to McDonald's, he'll say "going to McDonalds" a few times right in a row as he heads towards the closet.  It doesn't happen all the time but occasionally.  Also, he sometimes repeats things out of his movies -- usually in perfect context appropriate to the setting or situation -- and it's only because I've heard/seen the movie that I know he's quoting directly.  But it IS in context.  Only a few times has it happened in what seems a more strange way - once I heard him quoting the sales pitch from the previews on his Big Machines video to himself as he put on his pajamas.  That's the most memorable "scripting" I heard him do.

He has some obvious coordination issues -- was late jumping with 2 feet and will not jump off anything (even a step or a low bench) without holding onto my hand.  He hates going upside down or flipping around a bar at gym class.  But he often does somersaults and flips on his own now that he knows how. He climbs on jungle gyms and slides with no issues unless they're hot from the sun.

He has some issues with transition sometimes when he doesn't want something to end or doesn't want to go to bed, but is a very easy going child.  We go out a lot, we've never had to alter our plans because of him.  He's incredibly well behaved and polite.  He has had very few meltdown tantrums in his lifetime and he seems to roll with changes pretty easily.  He definitely notices routes/scenery as we drive, but he has no issue or concern with altering the paths we take, our schedule, or how we go about life.

After his flapping and toe-walking was noticed/commented by others about 8 months ago, I panicked, thinking as I'd "missed" that he was autistic.  His pediatrician is NOT concerned that he is autistic.  Neither are his teachers.  Although he does it more at home and/or when he's tired or not feeling well (he has lots of seasonal allergies), his flapping seems abnormal as he's gotten older.  

So, we took him through a detailed evaluation at our county ChildFind program.  They were incredibly thorough -- they did social, emotional, hearing, language (expressive and receptive), speech, educational/cognitive and psychological, and fine/gross motor evaluations.  He tested at/above/superior in everything except the motor skills.  He was about 3 months delayed in gross motor and "emerging" for his age.  In fine motor, he was about 8 months behind -- weak grip, failing to cross mid-line, unable to copy some pictures -- but not enough to qualify for services.  Everyone at ChildFind suggested that he is NOT autistic or on the spectrum.  They said some "echolalia" is normal if it's used as a way to learn about language and how to use it appropriately..sort of "trying it on" and if it's not the only type of language a child uses.  He is in OT once per week for fine motor and is doing great.  His OT things he "presents such a unique case" because he's very engaged/engaging/social.  She treats him as if he's got mild "sensory" issues.

We also had him evaluated by a private clinical psychologist and 2 pediatric neurologists.  All said he's not autistic. His neurological exams were normal, and the doctors suggested that some children have "stereotypies" ... some outgrow them and some do not.

That said, he's jumping more, sometimes while grimacing, and still flapping.  It happens when he's excited or proud of himself.  The jumping sometimes happens as "filler" while he's standing in the kitchen talking to me while I cook dinner before he goes off to play.  Recently, he's also singing all the time -- making up songs about mundane stuff, singing real songs,  or making up ridiculous words to familiar tunes.  He says he's "singing in Spanish" or "Dutch" when I ask him what he's singing.  He's also making up lots of words for his toys, doing lots of "baby talk", making pretend foreign language speak to his baby brother or making nonsense sounds.  It seems as if he's doing it to get me to react.  

My husband thinks this is normal and him just being a creative, silly boy who's testing us.  I'm concerned that it's Asperger's or autism and it's just so mild that no one saw it.

Do you have any thoughts or advice for me?  Should I pursue further evaluation?  Do children not on the spectrum do echolalia?  Or do the flapping and language oddities suggest Aspergers?  How do I get someone to evaluate him if everyone keeps dismissing my concerns?  He's doing great right now, but I'm afraid his behavior will begin to impact him socially as he gets older.

Thanks again for bearing with me on this!

Maria

P.S. I read another "Maria's" post from yesterday and it sounds as if her child acts very much like mine did at that age.

Answer
Hi Maria;

You have really done your homework. I agree with you that he "may" have Asperger's syndrome (AS) but that it is subclinical and so mild that he will go pretty much unnoticed in school. The litmus test is what does his behavior look like when around his peers in a group. I don't mean family or close neighborhood friends. Most AS kids that are in the mild range suffer from social competency and social fluency and cannot function in a group. They are good at chase type games or parallel play but cannot function around more than 2 to 3 children in an interactive pay scenario.

You'll need to find someone who specializes in AS and has lots of experience observing young boys suspected of having AS. My guess is he will probably be subclinical. Even if it is subclinical it will affect him socially as he gets older resulting , possibly in some bullying. He may prefer to avoid unstructured social times such as recess or lunch. He may become uncomfortable around large crowds. Observe him closely or video him at a peer's birthday party.

Kind regards,
James