Someone pointed out that I didn’t actually include my son’s autism recovery story on this blog. Oops. It’s in Evolution of the Revolution: From Hope to Healing. Final chapter. To rectify the lack of our story, here is a shorter version.
To summarize: a full 299.0 autism diagnosis at age 4. Language skills in the 4th percentile. Starting ATEC about over 70, but less than 100 (I had to do it retroactively so it wasn’t super accurate). Today, his ATEC is 2 because he’s still a bit of a picky eater. Otherwise, recovered. Just an awesome kid.
There was no starting gun to mark my son Connor’s descent into autism. No abrupt loss of skills or speech, no seizures or fevers, just an imperceptible braking, until his forward momentum in life just rolled to a stop somewhere between 16 and 22 months.
Not born with it:
I don’t know if it was my own health–undiagnosed chronic Epstein-Barr and mycoplasma pneumonia (maternal immune activation!!) that set him up; or my mouthful of leaky amalgams and 15 years of flu shots (mercury!); or even the case of salmonella food poisoning that put me in the hospital for four days halfway through my pregnancy and stripped my GI tract (no gut flora!). Could it have been the three ultrasounds or the 18 hours of pitocin?
Was it the Hep B shot at birth? My son turned blue less than 24 hours later, but the doctor assured us that was a normal stress response. The MMR? Total vaccine load? After every well child appointment I always had to clear my calendar for a week, because I knew I’d have an extremely fussy and feverish baby who would nurse constantly and not sleep. Whatever it was, whatever lowered my boy’s resistance and increased his risk, I’ll never know with complete certainty.
Lining up everything, everywhere, all the time:
By the time he was 22 months old, my beautiful boy was speaking less and less, having peaked at 16 months with the phrase “Too hot to eat the pizza!” His anxiety increased daily. We couldn’t leave the house without several pacifiers–one in his mouth and one in each hand–and his blanket, which he wrapped around his head.
Three pediatricians in three states assured me that he was fine.
Not OK
He wasn’t fine. I wasn’t fine. I assumed the full load of guilt–the guilt I produced myself in abundance, and the guilt lobbed at me by other people. There was something off about my kid, so as the mom, it was clearly my fault. I was reminded of this failing daily, from evil stares when I tried to contain monumental meltdowns while shopping or at the library, to helpful strangers suggesting my son would be fine if I just spanked him, to flat out assessments that I was clearly a terrible mother and this was all my fault.
The summer of 2001, leading up to our son’s diagnosis was particularly hard. We were drowning. Every day was a struggle and we didn’t know why. Our pediatrician waited until my son was three to agree that it may be time for a speech evaluation. I didn’t know that I could search that out on my own. It took six months to get an appointment. By then, I had to wheel him in the stroller to the desk because he couldn’t/wouldn’t walk following a knee injury. The speech therapist said that, in addition to pronounced echolalia and expressive speech in the 4th percentile, our son had cognitive delays and we should get an evaluation.
Looking back, she knew what was going on immediately, but couldn’t say because she wasn’t qualified by the state to diagnose. We found a special preschool class for kids with speech delays and got a referral for a neuropsych evaluation. Then September 11, 2001 happened and everything shut down, including our scheduled intake appointment.
Getting the diagnosis
Honestly, an autism mom could have taken one look at Connor, gripping a Thomas train in one hand, ignoring everything around him, and lining up rocks with the other at the playground at age 2.5 and given me the same answer, but due diligence must be done, the piper paid, etc. And so, autism. A full 299.0 diagnosis. Connor had some speech, but it was almost exclusively echolalia. He ran in circles; he jumped up and down for hours; he flapped his hands; he toe walked; he lined things up; he tantrumed; he’d flip out if I took an alternate route while driving; and he had no friends.
Dr. B, the psychologist who did the assessment, stopped after she made the pronouncement. “Mrs. R, are you breathing?” Not so much. I only remember snippets from that appointment, the highlights being: 1) my son would probably never make friends on his own; 2) we could take comfort in the fact that he wasn’t technically mentally retarded because his IQ was above 70; and 3) he was too inflexible and anxious for ABA.
We were gobsmacked. Autism was something that happened to other people, but only rarely. They couldn’t mean my boy, he was so affectionate. What was autism? What was going to happen to my son? What could we do? I knew my mother-in-law would ask about dietary changes, so we asked Dr. B about it. She kind of brushed that aside, mumbling something about no double-blind placebo controlled studies, and directed us to the Family Resource room at the clinic.
READ THIS BOOK!
I’m a die-hard bookworm from a long line of readers. My first step in the direction of doing something was to head to the bookstore. I cleaned them out of books on autism. In 2001, that meant five books. My mom, 2,500 miles away, found one book: Unravelling the Mystery of Autism and PDD by Karyn Seroussi. That was the only book on the shelf at Books-A-Million in Goodlettsville, Tennessee, so that was the one my mom bought. I had the same book in my stack, but it was at the bottom.
Two days later my mom called me, likely in tears because we were all a sobbing mess, and told me to put down whatever I was doing and read that book. Now! So, I did. That changed everything.
That book saved my son.
My husband wasn’t keen to change our son’s diet. Connor was living on bagels and chocolate milk. I could see his point, but I had grabbed onto a shred of hope and I wasn’t going to let go. I didn’t care if it was hard. I was willing to crawl through glass for a 1% improvement. That book gave me hope, but more importantly, it gave me something to do.
Taking the approach that it was easier to ask forgiveness than permission, I changed Connor’s diet when my husband was on a week-long trip out of town. I started by taking out milk. Within two days he’d stopped running in circles. Within two weeks, he had adopted his cousin’s stuffed bunny, renamed him Carrots, started singing lullabies and pretending to put him to bed. There was no way I was giving that bunny back. Sorry, Chloe.
Biomed support made all the difference
I found a small group of parents who had started a local biomed support group. Those parents became a lifeline. They connected me to doctors and therapists, pointed me to online support and resources, and became my friends. A few months in we found a Defeat Autism Now doctor out-of-state who was a godsend, Dr John Green, in Oregon City, Oregon. He was our team leader and a true thought partner.
Dr Green did a full battery of nutritional testing, including pee, poop, and blood tests. Once we had good nutritional values, we started oral DMPS for chelation.
The school week following our first chelating weekend was interesting. Two of the most skeptical therapists we had–top-notch speech therapists that had zero faith in biomed and special diets–both came to me to tell me Connor had turned a corner and they had seen significant improvement just that week. I mentioned to the first I suspected the new treatment we started was helping. She just rolled her eyes. When the second mentioned the slew of emerging skills, I just smiled.
We became early adopters of biomedical interventions. We tried chelation, IVs, targeted nutrition, antifungals, antibiotics, methyl B12, and supplements. I attended conferences. I read books, medical papers, and spent hours online. I took classes and even got through half of a degree in naturopathy before the school closed down. I was obsessed with helping my son improve. He had eczema, a million food allergies, sky high viral titres–especially for measles, intractable yeast and clostridia overgrowth, heavy metals, oxidative stress, nutritional deficiencies, low-level mitochondrial dysfunction, chronic diarrhea, bowel impactions, reflux, leaky gut, plus weak nails and brittle hair. For a year or two he didn’t gain any weight and his sleep–which had always been good–went to hell when his was five. We continued to test everything: hair, pee, poop, blood.
Recovery? Not on the radar
Recovery wasn’t even a concept I entertained. I just wanted life to be manageable. Frankly, day to day life sucked. My son was an anxious wreck and everything was stressful, if not flat out traumatic, for him. I couldn’t think more than three months ahead until our next doctor’s appointment. It was an immediate and narrowly focussed life, but it paid off. My son began to emerge from the fog of pain and disconnection. He gained three years of expressive speech in 12 months. He stopped tantrumming. Life got easier for everyone and I had a fire in my belly.
When Connor was in the second grade, we had him re-evaluated. The psychologist didn’t remove the diagnosis, but downgraded him to “very mild PDD.” He also registered a nearly 50 point improvement in his IQ scores.
It was interesting to me that none of the psychologists or educational therapists involved in that re-evaluation asked us what we did, like that kind of overall improvement and a 45-50 point increase in IQ scores happens every day.
Connor’s recovery wasn’t fast, cheap, or easy. He had several plateaus and at least two significant and scary regressions.
He made another huge leap in improvement after age nine when we added an extensive regimen of combination homeopathy under the direction of our holistic pediatrician. Every morning and evening I would mix his prescribed dose of up to 10 different remedies–5 drops of one, 10 of another, 30 of a third–feeling like a mad scientist, but seeing definite improvement across the board. We prepped him for another round of prescription antifungals and the combination of the two approaches cinched it. We’ve never had to look at that kind of treatment since.
Where he is today
Today Connor is 17 and he has recovered from autism. He had a few bumpy years with depression and anxiety when he hit puberty (DO NOT underestimate puberty), but has come out the other side with the help of excellent medical and therapeutic care. Last summer we ran a series of tests like we used to do when we first started. Everything looked great: the number and severity of food allergies (real IgE, histamine moderated allergies) has decreased dramatically and all the metabolic markers were normal. The tests for organic acids, dysbiosis and gut function were all pretty much perfect. I got teary looking at them and I swear I’d frame them if it wouldn’t mortify him with embarrassment.
Last summer he decided he wanted to be ripped. He changed his diet to primal/paleo excluded most grains and chips, added grass-fed or pastured meats, full fat Greek yogurt and fruit-and-kale smoothies. He achieved his goal, but he also blew away that remaining cloud of anxiety and depression.
He’s a lovely young man: kind, good natured, and good humored. He loves movies, heavy metal, photography, and theater. He takes on stand on the side of social justice in all things and thinks about life and the people he encounters. I couldn’t be happier or prouder. He’s happy that he can have the occasional pizza out with friends with no ill effect. (Yes, the whole pizza. Teen boys and their appetites.)
What we did
So what did we do to get here? A fairly complete list includes:
- GFCF diet, with removal of all allergens
- antioxidants
- high dose Vitamin A
- herbs
- homeopathy, both classical and combination
- antibiotics
- antifungals
- enzymes
- probiotics
- methyl B12, TMG, and folinic acid
- DMPS chelation, both oral and transdermal
- N-acetyl cysteine transdermal lotion
- TTFD
- glutathione, both IV and transdermal
- cranial sacral therapy
- BodyTalk
- …and lots and lots of prayer.
Keep in mind that this was in addition to occupational therapy with sensory integration 2-4 times per week, special ed preschool, full-inclusion through second grade; speech therapy; social skills groups; Floortime; RDI; special needs soccer; and karate.
There were things we tried that didn’t work or caused a negative reaction. I had a very sensitive kid and had to go very slowly. For example I tried eight different enzymes before I hit on one that worked. I begged samples from my support group and went through them one at a time. One gave Connor stomach aches, another gave him an eczema flare, and a third triggered odd behavior.
Food allergies and his extreme pickiness limited his diet. A trial of the Specific Carbohydrate Diet exacerbated his eczema and food allergies, so we went back to what had worked before. Please note: I recovered my kid during a six-year period where he never ate more than eight different foods.
Yes, we were lucky. My son responded early and consistently enough to show me that there was a definite biological basis to his autism. But it wasn’t just luck; we didn’t give up when we got overwhelmed. I was devoted to his recovery to the exclusion of just about everything else. If something didn’t work or he hit a plateau, I just maintained until I had enough energy or found a new approach to the issue and pushed forward. There was always something new on the horizon and always, always there was hope.
I was also lucky–and I’m still lucky–that my husband stood shoulder-to-shoulder with me on this. We never stopped moving forward. No matter how dark my own world was–and at one point I couldn’t drive my son to therapy without having a panic attack myself–or how expensive the treatments were, we didn’t stop. It was worth it. Hope is always worth it.
And that’s our story.
Here are some books and resources.
Books:
(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.
The Kid-Friendly ADHD & Autism Cookbook, Updated and Revised: The Ultimate Guide to the Gluten-Free, Casein-Free Diet by Pamela Compart
The Autism & ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten Free and Casein Free (GFCF) and Other Interventions by Barrie Silberberg
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!!)
Websites:
www.TACAnow.com
www.Autism.com
www.Autismone.com
www.ThinkingMomsRevolution.com
There’s enough information on any of these sites 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.
There were two tour leaders on my recent trip. One was the author Kathleen McGowan and t he other was her dear friend Isobel Denham. Isy has a wicked sense of humor and a musical voice. One day we piled onto the bus, hot and exhausted from a climb up Ste Baume and Isy calls out over the PA, in a trilling voice, “I need to send our dinner order ahead to the restaurant in Stes Maries-de-la-Mer. Who wants slow bull?”Yes, that’s what she said. Slow bull. Yummmm. Sign me up.
(yes, the sky was really that blue)
