Late last year, our son Avery was diagnosed with Autism Spectrum Disorder.
This did not shock us, other than hearing the actual words being said out loud. No, we knew; he’d been showing various ASD symptoms and behaviors for a few years, and having recently added stimming (pinching his fingers in front of his face while talking) to his long list of quirks, we knew he’d probably have his ADHD diagnosis ‘upgraded’. He has all too many hallmarks of a high-functioning kid on the Spectrum: terribly rigid, too literal, limited interests, social interaction issues, and more. It was clear; we finally had our diagnosis of ASD.
Fast-forward to a month ago: September 12, 2016, the date that (for my family) will live in infamy! (Or, whatever the opposite of infamy is!) We drove down to Des Moines, Iowa to see Dr. Kavalier of Kavalier & Associates, recommended by an old friend of Warren’s. Dr. Kavalier had been using an off-label Alzheimer’s medication on kids (and adults) with ASD for over a decade with remarkable success, so we decided to meet with him.
I was nervous, on two fronts: Part of my feared he’d looked at Avery and say, “Oh, this won’t work for him, he’s too high-functioning”. Another part of me feared he’d fit the profile, but the medication just wouldn’t work.
Neither fear came to fruition.
Dr. Kavalier took Avery’s medical history from us, and observed him as he stimmed quietly, in his chair, and withdrew into his imagination. Then Dr. Kavalier began telling us stories of thousands of patients (literally, over 3,000, to date), 99% of whom had been turned around by this medication called “Namenda” (generic: Memantine Hydrochloride). He told us of non-verbal Autistic kids who suddenly spoke to their parents after being on it for three days. He told us about one, formerly non-verbal patient who waltzed into his office after being on the medication for three weeks, looked him in the eye and exclaimed, “Dr. Kavalier, I’m the smartest one in my class!” Example after example, kid after kid, just like ours. We started to think, “What if this could help Avery?”
We told Dr. Kavalier we wanted to try it.
Three days after Dose #1, when we called Avery upstairs to dinner, he didn’t whine or refuse. Instead, for the first time in recorded history, he replied, “Okay, but first let me put away my toys!” The next day on the way to school, he started a spontaneous discussion with me about whether Dolphins or Humans were smarter; he heard my reasoning, and contributed his own thoughts, in a fully organic, real-live, give-and-take conversation. That afternoon, he addressed a friend’s mom by looking her in the eye and asking his question (no stimming, pacing, or searching for words).
In two weeks’ time, he was starting to turn things around at school, and was more easily engaged in the classroom assignments. He stopped having explosive emotional outbursts when plans changed, or when asked to transition. He began engaging in conversations (both at home, and at school) outside his narrow range of interests, and stopped withdrawing into his imagination so much.
One month in, Avery’s getting A’s and B’s on assignments he’d have gotten F’s on before (because he thought them too ‘boring’ to attempt). No more outbursts, no more disruptions in class, no more refusing to do things, and for the first time seems genuinely engaged in school, and enthusiastic about what he’s learning. Obsessive thoughts/ speech patterns, stimming, and withdrawing from reality have all been reduced by around 85-95%. We are still playing with his dose, and there is still room for improvement (the stimming, some social anxiety)… but the gains we’ve seen make us feel like shouting it from the rooftops:
This stuff is a miracle drug.
This could be a cure for ASD.
This shit WORKS.
Dr. Kavalier tells us there are no side-effects (and we haven’t seen any, either), and there is no reason a person can’t be on Namenda for an extended period of time. His patients who have been on Namenda for 10+ years all are pictures of health. It is unknown if children who have taken Namenda until their 20’s will be able to be weaned off, but he suspects it’s possible. We’ll know in the next few years; that formerly non-verbal little girl who proclaimed she was the smartest one in her class? She’s just started college, and she told us she wants to be a Pediatric Oncologist.
Now… I could get into all the reasons why this medication isn’t FDA approved for kids ... a) few medications actually are, b) now that it’s generic, the companies don’t see any financial incentive for it; c) whatever, life sucks. And just search the interwebs; plenty of people (and the FDA!) warn of the "dangers" of off-label prescribing. However, given the strength of Dr. Kavalier’s own data and experiences, and given our own friend’s daughter’s miraculous recovery… we felt it was a risk worth taking. For, as Dr. Kavalier said of Avery, “Look, if he doesn’t go on the medication, he’ll be okay. He’ll grow up and probably go work with computers; he’ll work in IT, but he won’t interact with people unless someone needs help with their computer. And he won’t go to the Christmas party. But… if you put him on it, he’s clearly very bright, so… the sky’s the limit.”
It’s not that a job in IT would be a fate worse than death or something, but rather it was the Christmas party bit that stung. We want Avery to have a full life, engage with other people, have friends, maybe have his own family one day, and experience all the world has to offer. We didn’t want him stuck in his own imagination, struggling to connect or hang onto a job. Or, worse; sometimes ASD kids turn into very disturbed teens, difficult to control, angry, sometimes even violent. The "risk" was one we were willing to take.
If there are any changes, I'll post about it right away. But... one month in? I'm convinced. I'm shouting it from the rooftops. This shit works.