Expert: Dr. Sharon A. Mitchell - 12/22/2010

Question
Thanks before hand for your answer.

I'll start at the beginning to try to give as complete a picture as possible.

I have a 4 and 1/2 year old grandson. "John's" mother's pregnancy with him was uneventful. Postpartum period was also uneventful. But, "John" had jaundice for several days after he was born and was put under the "bili" light for a time.

Both me and my wife noticed that he was different. For his first 18 months, this is what we noticed:

1) He absolutely would not track with his eyes (he would almost never look toward the person speaking to him; he has normal sight and hearing)
2) He acted "catatonic" much of the time, not responding to almost anything (people talking, calling his name) during his first year
3) Speech by the end of his first 18 months was basically nonexistent (actually he would make sounds, and tried to talk, became chatty after age 2, but 100% unintelligible at that point)
4) Was (and still is) an extremely picky eater, preferring chicken nuggets and peanut butter and jelly sandwiches above most anything else
5) We, even as his grandparents, were "strangers" to him and he never displayed any loving emotion
6) Mostly flaccid when being held and never "cooed"
7) Never pointed out objects
8) Loved to stare at moving ceiling fans (he would track that)
9) Especially loved staring at a red wreath hanging on the wall (red is his favorite color today)
10) Extreme aversion to anything new (July 4th fireworks absolutely freaked him out a couple of years ago, new foods, and a type of "super separation anxiety" until about a year ago)

From 18 months of age until today (he is 4-1/2 years old):

1) Started walking at 19 months (his dad did not walk until 18 months)
2) Seems to be what I can only describe as "hyper-emotional"; he can go from being ok one moment to flat out squalling the next, over simple things, for example, having something on his plate he does not want to eat or try, having the TV turned off, his 2 year old brother hitting him (even gently and causing no injury), etc.
3) In the last year (and has gotten worse) has started spitting, licking, and smearing saliva everywhere, especially when alone in his room. He will smear saliva on the walls, spit on his legs, and frequently puts his fingers/hands in his mouth. He licks family members, walls, windows, toys and other objects and himself. His dad just thinks this is a "phase."
4) Potty training was not difficult

Socially, he usually gets along well with others. He laughs and smiles. He loves to play, and is very interested in "boy" things, like toy guns, cars, trucks, police cars, construction trucks. His play is rarely structured. He gets very upset with yelling and crying if another kid takes his toy. His mode of attack, when he gets angry, is to bite, whereas his younger brother will hit.

BY FAR his favorite activity is watching TV. Cartoons mostly. He becomes "lost" and has always seemed mesmerized by it. He will usually ignore everyone. He gazes at the TV intensely. About the only way to get his attention is to turn off the set, which only serves to get him yelling and crying. Even though he seems to ignore others when he is watching TV, I believe he pays attention, because he can often later repeat or recite (though not perfectly) what somebody else said when he was watching. He gets very upset when he sees a real person on TV being threatened or hurt. Violence in cartoons seems to have no effect.

And, watching TV is what usually gets him flapping. When he gets very excited, he will flap his arms. He starts this by turning away from the TV, flapping his arms, looking up towards the left, sometimes cross eyed, mouth could be open or closed, but with a weird smile, almost like he is in ecstasy. This will last for maybe up to 30 seconds. Then he'll watch TV again.

As far as his emotional development goes, I'm very concerned. He has never, as far as I know, ever told anyone he loves them. The only time he will go to someone (usually a parent) is for solace when he is hurt or upset and crying. He never hugs anyone. I know he is only 4 and a half. Yet, I don't know any so-called normal child who seems so emotionally stunted that he can't stand to be affectionate. He will allow himself to be hugged but turns his head away. It does not matter who the person is. And you'd better make it quick or he will yell and cry. We can get by with a quick hug and a kiss. But nothing more.

His dad is a big guy. John himself is at the 100% mark for both height and weight. He is slender, but very tall for his age. Physically, he appears normal. A large head for his body. He runs and plays like most any other 4 year old. But, TV is his big thing.

As a nurse, I cannot help but to notice these things. Thing is, John's mother is also a nurse, but both his parents are clueless. They absolutely deny that anything is suspect or wrong or abnormal. They tell us that John has a "quirk" or is just "going through a phase" no matter what issue we discuss. We have never told them what we really think because they get a little hostile, even with the little that we have brought up. And really, we don't actually know what we would call it anyway or what we could say, except that evaluation is, we believe, warranted.

I don't want to invent a problem if one does not exist but I also don't want to ignore it if there is something wrong. Neither I nor my wife can shake the nagging feeling that there is something not right here and we've felt this way since John was just a couple of months old.

He did get speech therapy earlier this year, related to what to me was obvious development delay (including a total vocabulary of less than 5 words by the age of 2 with poor enunciation), but his mother only agreed to get him therapy because we got her to see that he would have a difficult time in school if the speech problem persisted. Beyond this, though, they see nothing wrong at all.

When John is playing and acting "normal," we say to ourselves that there is nothing wrong. He is ok. Other times we say, "this is not right. There is something wrong here." Making things worse is that no one sees what we see. Yes, they see the quirks and behaviors, but everyone just excuses them away.

So, given what I have tried to describe, what are your thoughts?

Thanks again.

Answer
Ron, you and your wife are in a difficult position. You're concerned about your grandson, yet don't want to alienate his parents.

Reading through your descriptions, yes, I share your concerns. I'm pleased that he has received some speech therapy; that will only help. Do you have any idea if the speech therapist has mentioned which areas she is working on in therapy? Such therapists work on far more than just articulation; they look at communication as a whole. Often they do tests that look at the child's receptive and expressive language skills in addition to how well the child pronounces sounds.  This therapist will have an idea of how your grandson is progressing compared to others of his age.

You mention that he received speech help because his mom worried about how his intelligibility problems might affect him in school. That is a good starting point and I'd encourage the family to continue with this therapist. If the therapist discontinued her services, it may have been because the child's enunciation improved. She may have assumed that his communication in general would improve spontaneously. Most likely she would be open to a repeat visit to assess his progress.

Although you are clearly worried, you'll need to look at this from the parents' points of view. When you have a child you have high hopes. If there is some niggling suspicion that all might not be well, it is easy to push that to the back of your mind. After all, all children develop at their own pace, you're a good parent and things will work themselves out. But John's parents may suspect something. You say that they call him "quirky", or it's a phase. This is what all parents would hope. It's very hard to look at the possibility that your child may not be developing typically. It can be especially difficult when you are professionally trained in the fields of medicine or education.

Your grandson is now 4 1/2. I assume that next fall he will be entering school. This might be the most helpful thing to happen to him (other than having caring, concerned grandparents). From what you describe, it is my guess that once in kindergarten, he will appear different than most of the other children. It will then be trained teachers, rather than family members reporting their observations to John's parents. As hard as it might be to hear, the news coming from an at-arms length source may be easier to take.

Often parents react with anger and with denial. This may be very hard for them to accept. But the school will likely be persistent. They can offer help and will work together with the family to provide assistance.

A plus when John enters school is that you say he does all right socially. He may find the structure of school difficult - having to start and stop activities when someone tells him to.

You have given an excellent developmental history and description of your grandson's behaviours, strengths and challenges. I would suggest that you keep this. You may be called on to help present this information to a professional in future.

At the following link is an online screener you could take, based on your knowledge of John. This is in no way a definitive test for Pervasive Developmental Disorder (PDD - the umbrella term under which everything in the autism spectrum falls). http://www.childbrain.com/pddassess.html

First Signs is an organization devoted to helping people recognize the early signs of autism. Here are some of the red flags: http://www.firstsigns.org/concerns/flags.htm Here are some of the hallmarks of typical development: http://www.firstsigns.org/healthydev/milestones.htm This next link has a video glossary of typically developing kids along side children with an autism spectrum disorder. You need to register to take a look at the videos, but it's free and without obligation. http://www.firstsigns.org/asd_video_glossary/asdvg_about.htm

Although from your description, there may well be basis for your worries, I'm not sure you can push this with the parents any more than you have. You don't want to alienate them or make them so defensive that they are not open to your suggestions. I think time will take care of some of this as John enters school this fall.

I wish you and your family all the best,

Dr. Sharon A. Mitchell