recovered past participle, past tense of re·cov·er (Verb)
Welcome to my corner of the interwebs. Likely you are finding me after reading about my son’s recovery from autism in the San Jose Mercury News. It took us a while to decide to speak publicly about his recovery, but found we were met with disbelief that such a thing could happen. Surely we were mistaken.
It happens, maybe more frequently than we know. I know several kids who have lost their diagnoses, but in almost every case the families have gone underground, changed schools, changed social circles, buried that part of their lives. Some of them don’t just move on, they erase any mention of it in their family stories. I know many families that carry an overwhelming burden of shame and embarrassment that they have a child with autism. And guilt. Let’s not forget the pile of guilt that accompanies a diagnosis.
The recent paper out of The University of Connecticut that documents that some kids can and do lose their diagnosis is a landmark. It’s like Pandora’s box…opening the box one more time, letting a spark of hope into the world that had previously been locked down and denied. When our son was diagnosed in 2001, hope for improvement was not on the menu of possible outcomes. Coping, managing, and accepting…that was about it.
We were told all the biomed path offered was false hope. It was a waste of money and effort. Having seen small but definite improvement when I changed my son’s diet, I pushed on anyway. I was lucky enough to find a small squad of like-minded parents locally who, in turn, connected me with national resources and support. Above all, it wasn’t false hope. It was honest-to-God hope, slim and elusive, but real.
And now we’ve got some serious backup. An autism diagnosis is no longer something carved into granite when it’s handed down. Maybe it’s written in sand and it just needs the right wave to wipe it away. No parent hearing the diagnosis today has to have the door of their kid’s future slammed completely shut. Perhaps these kids can be well again.
We decided to share our story because we believe it’s important for other families to know that improvement is possible. Until researchers can really dig in and look at these kids, look for commonalities, outliers and downright miracles, individual stories are all we have.
When we started down our road to recovery in 2001, I never thought we’d see the success we’ve had. I had a better chance of making it to the Olympics as a completely inactive middle aged mom. But we tried anyway, persevered, made some wrong turns and took some chances. I was willing to crawl through glass for every 1% improvement in functioning.
Were we lucky? Heck yeah. But we were also diligent, dogged, open minded and a little bit fearless. (Not necessarily things I was known for pre-autism!)
What we did required a complete paradigm shift. We couldn’t look at anything from the old pre-autism perspective. I would like to invite you to be willing to question the status quo: to consider the possibility of a biogical underpinning to most cases of autism that can be addressed through a functional medicine approach to treatment. This isn’t “instead of” traditional therapies like ABA; it’s “in addition to.”
Here are some resources to get you started:
(I’m trying to figure out how to insert the Amazon.com widget. Be patient. I was an English major, not a computer science major)
Healing and Preventing Autism: A Complete Guide by Jenny McCarthy and Dr. Jerry Kartzinel
Very good overview of biomedical interventions. Whatever you think about Jenny McCarthy, she certainly shone the light of the media on biomedical treatments. She teams up with Dr Jerry Kartzinel, a very experienced Defeat Autism Now doctor and “interviews” him for the content of the book.
Changing the Course of Autism: A Scientific Approach for Parents and Physicians by Bryan Jepson, Katie Wright and Jane Johnson. This is the book that has all the research articles you could ever want to wave in front of some disbelieving pediatrician or skeptical family member.
Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock. I really like this book because it expands the view beyond autism to include other neuro-immune issues. It’s all connected, people! Dr Bock is another very experienced DAN doctor.
The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention (Sears Parenting Library) by Robert Sears. This is a gentle but comprehensive introduction to biomedical treatments, including diet, antifungals, detox.
Special Diets for Special Kids, Volumes 1 and 2 Combined: Over 200 REVISED and NEW gluten-free casein-free recipes, plus research on the positive … ADHD, allergies, celiac disease, and more! by Lisa Lewis Ph.D.
Cooking for Isaiah: Gluten-Free & Dairy-Free Recipes for Easy Delicious Meals by Silvana Nardone (I admit I don’t have this cookbook, but I want it!!)
There’s enough information on any of these three to keep you up late reading for weeks.
Good luck and Godspeed. It is my sincerest hope that you can find what you need to help your child function in this world, to live knowing love, to find meaningful work, to participate in life to their highest potential.
Disclaimer: I am not a medical professional and I am not qualified to give any medical advice. I am a mom who has spent a lot of time and energy learning about biochemistry, neurology, immunology, gut health, healing diets and alternative modalities. I am happy to share what I’ve learned as a starting point in your own education. Please consult with a licensed medical professional for advice and guidance.
Also, biomed deniers, epidemic deniers, and Neurodiversity champions who are up at arms at parents trying to “fix” their kids, and anyone else spoiling for a fight: no flame wars. I moderate all comments. You might want to find someplace else to vent.