The Neck, the neck, the neck -- and a missed diagnosis

When T was a baby I used to say somtimes he looked like a little turtle. His head spent a lot of time tucked down into his chest. The more I look into this issue with nodding and shaking his head, the more astonished I am at how connected all of this stuff is. I just got done reading an astonishing chronicle of the functions of the neck muscles, and I can't believe how they touch on every single area of deficit T has: not just turning the head, but operating the jaw and the tongue (as in for speech!), raising the arms (as in for pointing!), BREATHING (yes, T has respiratory issues) ... according to this website, one of these neck muscles is supposed to turn the head in unison with eye muscles (could this be related to VISUAL PROCESSING ISSUES?) ... these muscles are critical to posture and coordination ...

Of course I knew that postural stability was an issue, and hypotonia was an issue, and that getting T's head up off his chest was an issue ... but I never saw how all of these things work together.

I am astonished. And yet I'm not. when T was a baby I used to worry that he had torticollis (wry neck), because I read about it in a baby book, and sometimes, he reminded me of that. Especially when he was upset he DID seem to twist off to one side or something.

But then there's this: According to this article ("Infantile Reflexes Gone Astray in Autism"), researchers suggest that at least some infants with autism still have "asymmetrical tonic neck reflex" and other reflexes that are supposed to go away. You know what? I already figured that out about T. In fact, I actually told his pediatrician that he seemed not to have outgrown certain reflexes -- including the rooting reflex -- even when he was still 2 years old. i.e., I could stroke his cheek and he would turn toward my hand and open his mouth.

When T was learning to walk, which required A LOT of help, he walked like he was fencing. We thought it was cute. Guess what these researchers describe:

"In another autistic child we studied we found that at 11 months of age the child was beginning to stand and walk. In this child also, the asymmetrical tonic neck reflex was still present so that the child overbalanced and fell in the direction of the outstretched arm."

Yep. That was T. Oh holy cow, that was T.

So ... I'm feeling kind of angry right now. Shouldn't SOMEBODY have figured this out? Shouldn't the DEVELOPMENTAL PEDIATRICIAN who charged us ONE THOUSAND DOLLARS to evaluate T have mentioned this? Shouldn't this man who sits on multiple medical school faculties, who practised at Harvard Medical School, who has decades of experieince, shouldn't he have FRIGGIN' MENTIONED this? Does he even KNOW?

I am pretty ticked off. Oh, the regular pediatrician just kind of acted like ... oh I wouldn't worry about it, he'll probably grow out of it kind of a thing.

These researchers have figured out how to diagnose this problem in very young infants -- we're talking 6 months old. And it would have caught T too. It really would have.