One of my most recent (and yet also oldest) worries has been the hormones. So many autistic children have hormonal imbalances it seems, so we are not alone. But since he was an infant, T has had near constant erections. The pediatrician consistently discounted this as being of any significance, but I have a NT child also, so I know this is abnormal. Given the number of other kids with excess testosterone, I feel confident this is a problem although I have not bothered to have T tested.
I haven't had him tested, because it is expensive and will, I believe, lead nowhere unless I'm prepared to give him lupron, which some parents do. It is extremely controversial, of course, although I think it is very shocking the extent to which these parents are villified and mocked by others. There are several parents in my autism support group whose children hit puberty at the ripe old age of 8, and I think about this a lot as T gets older.
Am I possibly making a mistake by not addressing the excess testosterone? I don't know. It seems risky to me, there is just so much we don't understand. Although I understand that testosterone and other androgens can cause damage, it seems to me that for all we know, they might also be elevated for a reason. Maybe they have some other effect that is beneficial -- how do we know?
After hours of reading, I still don't really understand much, but I have come away with one fact that I found very interesting: According to Allan Mazur, although testosterone has been linked to problems like aggression, excessive risk-taking, delinquent behaviors, and the like, it turns out that these outcomes are all context-dependent. They are influenced by things like:
1) the quality of the child's relationship with his parents; and
2) the behaviors of his peers.
Dr. Mazur speculates that higher testosterone might confer social benefits under the right conditions, and I find that very interesting indeed.
(See this article, this article, and this book for more.)
Maybe this extra testosterone is just more proof that my son is an "orchid child," who just requires that extra care to bloom. In case you haven't read this article, an "orchid child" is not some weird new age thing, it means that some children have unique attributes that make them extra-sensitive to their environment -- they need a "SuperMom" -- without one they will not succeed, but with one, they may flourish even more than their peers (called "dandelion children" by the author).
Here's another interesting fact: although we tend to focus on testosterone as a cause of behavior, it appears that testosterone levels are also influenced by experience. Dr. Mazur calls it "reciprocal causation."
It's probably obvious why the "orchid child" premise is a favorite theory of mine.
At any rate, there certain seems to be a fairly wide consensus that autistic children are more vulnerable to environment than others, and a lot of researchers (like these) are busy trying to find that environmental trigger. I have read suggestions that there are links to stress in the mother, infections, vaccines of course (by some), autoimmune disorders, even cable television. But I wonder if they are focusing too much on looking for a physical trigger.
Dare I wonder aloud (so to speak) whether parenting matters? I know this is kind of taboo to bring up. If anyone is reading this, I'm sure you are saying, "but that refrigerator mother theory was discredited long ago." But I am not in any way suggesting that a lack of affection by mothers causes autism. But I DO wonder whether we don't have fewer REAL "supermoms" than we used to a few decades ago. Surely we do.
How many of our children are in daycare and preschools that are not top notch? How many mothers can afford to stay home or afford to put their children in really top notch centers with very low teacher to student ratios? We were advised by the "experts" to interact with T at least once EVERY 5 MINUTES. And even now that he is 3-1/2, not to leave him anywhere with a ratio of less than 3-to-1. Who can do that? Who can afford that?
30 years ago, were there more mothers living at home, with help? I'm not sure, but I wonder. Is it possible that more mothers had mothers, sisters, even older daughters? Is it possible that life was just radically different?
I have to wonder whether there aren't some children -- NOT all of them, they are clearly not all the same -- but SOME children, who require never-ceasing, endless, copious, exhausting superhuman amounts of attention. OK, I don't have to wonder, I KNOW it, because that is my son. He requires it or he will not develop. Were there times when I couldn't do it? You betcha. I'm not a refrigerator mom, but I am human, and I have limited resources.
When I get tired and I give myself a break it takes the blink of an eye for T to start "checking out." I don't know why. But the point is that he does. Less and less now, but he does.
Fortunately, I have been blessed enough with the ability to earn a true livable salary working only 15 hours per week, with an amazing husband who also works part-time and is a full-time, second primary caregiver the rest of the time. But where would we be without those things? I truly don't know, but in my heart I suspect very much that our T would be on the severe end of the spectrum.
Well, that's sort of an aside, and I'm sure that to some degree, I just want to believe that what I does matters. That it's in my power to just grab him and hoist him on up into high-functioning adulthood. I just do want to believe that, and I won't lie about that.
And I don't really know how severe T is or would be. I will say that Jayden, the star of "Bye" (which I really recommend if you haven't seen it, it is only 10 minutes long), whose mother says he was diagnosed as "severe," reminds me very much of T when he was that age. Not every minute of the day, maybe, but there is nothing about Jayden that is unfamiliar to me, although T was diagnosed with PDD-NOS instead of classic autism, and he was labeled "moderate" instead of "severe." A few months ago some county therapists expressed the idea that he seemed more "mild" to them than "moderate," so maybe I'd like to take some credit for that, but I don't know. I didn't have that much respect for the therapists in other respects, so I guess like everyone else I just believe what I want to believe.
So ... what does this have to do with testosterone? I don't remember anymore, except that I'm clinging to some way of looking at things that gives me the power to influence the outcome without giving my son drugs.
Maybe being a supermom could mean that his extra testosterone won't get him into trouble. Maybe if I could just do everything just right (OK, I know I can't be perfect) -- it will all turn out okay, or even better than okay.
On the other hand, I'll be singing a different tune if he starts sprouting body hair next month.
Thoughts on Newtown
5 years ago