The other day on the Today Show, Dr. Nancy Snyderman presented a story of a family whose boy has "recovered" from autism.
I sat watching with my mouth open. I was stunned not because the boy made such progress over a disorder that pretty much every pediatrician will tell you is incurable, but because Dr. Nancy Snyderman was actually reporting on it on a major network news program. I had never seen such a thing! You see, we moms in the trenches of autism have been seeing some kids improve dramatically for years and years. We are the ones who have been the coordinators of improvement. The overseers, statisticians and documentarians of progress and recovery. But we are never asked to share that data by the American Associations of Pediatrics or the Center For Disease Control. Our doctor visits were virtually "hope-free". I have seen my own son -- now age 11 -- notch milestones that developmental pediatricians said he'd never, ever achieve. In fact the day he was diagnosed in 2000 at 3 years old is referred to at our home as the "Big Never Day". A disarmingly icy female pediatrician told us our son would "never" do so many things that he does today not the least of which are mainstreaming at school or saying "I love you, Mom" unprompted...check and check!
While I was encouraged by Dr. Snyderman's piece on young Jake Exkorn's success I couldn't help but be a bit cynical because after Matt Lauer said "it's a real sign of hope" Snyderman made such a deliberate point of declaring "and there's real science behind it and that's important". I took that very personally because so many pediatricians I have met with over the last 10 years would never validate stories from so many of us about how a lot of our kids responded to treatment-especially diet and biomedical which most seemed to regard as taboo for some reason. We have been ridiculed at the mere suggestion of recovery. My requests for blood work and other diagnostic work ups for my son were met with disdain. Why? Why wouldn't you want to comprehensively treat a child with autism? What might you learn about this devastating neurobiological disorder?
When I have spoken publically about our journey I have been criticized as a "celeb junk science peddler" for talking about what I believed triggered my son's autism, offering hope and discussing what has helped improve my boy's cognitive function. Unlike other celebrity autism activists' claims, my son is NOT "cured" or "recovered" (new hurdle is puberty which mixes poorly with autism, fun!)but his progress is noteworthy and in some ways we feel so blessed because tragically not every family has access to treatment and have been given zero hope from their doctors . That breaks my heart. But I have long seen that recovery is possible when all the stars align with a variety of treatments and the means to access them. It was surreal for me to see Dr. Snyderman tout this as some sort of "breaking news" or anomaly.
I will be upfront that I had not been a huge fan of Dr. Snyderman's hard-core rigid stand on vaccine safety. She has basically towed the line well by using her position on the Today Show to declare numerous times that there is no causation or link and basically relaying that all 30 plus shots given under every circumstance to every child is 100% safe all the time. Case closed. Jury dismissed. That is certainly her right to say that but well...that was not our experience. I know for a fact that not all kids can tolerate them because my kids could not. Let's identify them please before any damage is done and discuss alternatives. And if she is right then why then does the vaccine injury court even exist paying millions to families who have the resilience to go up against the machine and claim their child's autism spiral was kicked off by toxic overload of vaccines?
Overall, we just need pediatricians to have better, nuanced and less condescending conversations with parents concerned about vaccine safety because the "I'm a doctor and I'm never wrong" attitude is driving parents away from vaccines and I don't necessarily believe that is a good thing. I am not anti vaccine but I am anti people labeling me as such just because I raise concerns and objections based on my family's experience. After his devastating injury from the MMR shot in 1999 imagine my frustration when I couldn't find a single pediatrician who would work with me with alternative options as I struggled years later with giving the same shot to my two younger boys. They all come from the same gene pool after all and it is not uncommon that several siblings can get autism. They all kept telling me to just give it to them without "studying" the details of what happened to my first boy... That left me scared, alone, hopeless and helpless.
But my absolute favorite thing Dr. Snyderman said this morning were three words: "We are learning". "We are learning"...That was a really nice and encouraging statement. There was something about her tone. Softer. Less defensive. It gave me a slight impression that the deep communication chasm between many disenfranchised autism parents and mainstream doctors is closing a smidge. I know she was only referring to learning about "recovery" but maybe exploring better treatment options is next then ...who knows? An alternate vaccine schedule perhaps and more rigorous study of susceptibility/predisposition to vaccine injury??? Well... a mom can dream! But seriously, if the AAP wants to lower the rising rate of unvaccinated children in schools they need to really listen to and acknowledge the fears of ALL parents not just those who legitimately fear measles outbreaks. The stonewalling is counterproductive trust me. Meanwhile every 20 minutes a child is diagnosed...We definitely need some more Kumbaya moments!
At the Peete house over the last 10 years, we have had remarkable results with diet, enzymes and vitamin B therapy, glutathione replacement treatment, chelation, music therapy and most notably lately hyperbaric oxygen therapy (HBOT). But popular vaccine advocate Dr. Paul Offit called HBOT "quackery" (because there's no science he claims)...what a buzz kill! But we will endure that negative thinking all day long while enjoying our son's resulting explosion in language! (Check this out!)
So I think in general there has been this reluctance to "treat" autism with anything but traditional behavioral therapies. A rigid reluctance to think outside the box and treat the whole child -looking into their gastrointestinal issues for example. So many children on the spectrum are physically ill yet in my experience pediatricians seem so uncomfortable with this fact. I would love to have the chance to ask Dr. Snyderman why this is. But like the "recovery" piece that ran this morning maybe she will come around to report on the high rate of GI issues among kids on the spectrum-old news for us autism parents -but probably only when there is "real science" to back it up. Meantime: tic toc...
In the end though I am very hopeful for the future of these children and babies to come for regardless of our various vantage points and experiences we all share in the tangible dream of eradicating autism once and for all.