My son was diagnosed with Autism in 2007 when he was 4 years old. I got a folder of information and what felt like “good luck with that” advice from the developmental pediatrician. I remember asking what we should do next and his answer was try to get him in behavioral therapy (40 hours a week at the time was recommended) and just take him home and love him.
That last part used to make me so mad and now it just makes me laugh. I used to wonder if he thought we were just going to leave my son at a rest area on the way home? And then I would also think how ridiculous it was to suggest that loving him more (is that even possible?) would make everything OK.
When I got home I immediately called my insurance company to find out what was needed to get my son’s behavioral therapy covered. The joke was on me – insurance didn’t cover it AND even if it was covered, there were no providers within a 3 hour drive from where we were living. Good times.
It never occurred to me to not turn over every stone I could find in helping my son. And it was weird to finally have a definitive diagnosis and with that came so little advice or direction or access to the one recommended therapy. In those six months after getting an official diagnosis I implemented a couple of things that I learned about from other parents. At our follow-up appointment with that same diagnosing physician, I was so excited to share the changes and improvements we were seeing in my son because of these different approaches and the doctor’s response was: Well, you’re probably just thinking you’re seeing that, there’s no evidence that any of that actually works. He also told me I was just wasting my time and money on these pursuits. And at this point in time, we were only talking about a basic dietary change and using Melatonin to help with sleep.
Um, dude – I’m very sure my son was now sleeping, he’s not screaming 24/7, he’s making better eye contact and I even saw him laugh once or twice. Literally a different kid. It was at that point I divorced the allopathic medical model. I still use the system when I need it, but I don’t expect it to understand anything that’s not in that lane. I’m not going to trust a system that’s intent on gaslighting me about what does and doesn’t work for my kid.
I would have thought that in 2024 the advice and guidance parents are getting at the time of diagnosis would be so much better than what I got but I’d be wrong. In fact, it’s probably worse. I have been spending some time lately in larger parent online support groups and most of the questions are from parents who are just getting thrust into this life. Their kids are 3-5 years of age and they’ve just received an autism diagnosis. They are not even getting information about basic therapies and how or why they might be helpful. They are not given any information about GI dysfunction or the high rate of seizures in Autism and what to look for and what to do if they suspect that. They aren’t given any information about brain development and how that relates to behaviors. They aren’t given any information about dealing with behaviors. They certainly aren’t getting any information about how there are NUMEROUS options to explore. And that chafes my ass.
My son has made remarkable progress over the last 15+ years because of the treatments and therapies I chased down and tried. Some worked, some didn’t. And all of that was great information and data in learning more and more about my son’s individuality and health.
I don’t think everyone should be on one specific diet but I DO THINK everyone should be aware that it can potentially make a difference and go from there. When my son was diagnosed, Autism was at 1:150. Today it’s 1:36 and it seems like there’s less knowledge rather than more. HOW IS THAT POSSIBLE???!!?!
Take a slow breath Amy, slow breath.
Wouldn’t it be cool if there was some sort of graphic or checklist that would help parents get a better understanding of this? Yeah, I thought so too so I made one.
Pursuing these different avenues gave my son: Freedom from chronic constipation, freedom from nervous system dysregulation, freedom from aggression, freedom from OCD, freedom from PANS (aka neuroinflammation), freedom from cognitive rigidity and those are just the highlights.
Bottom line – improving health improves brain function. And what my kid needed support in is going to be different than what another kid needs. But that doesn’t mean we give up or don’t try. We research, we discern, we apply, we analyze, we modify, we move forward. We don’t accept that there’s nothing else available to learn and apply.
To get you started, I’m going to include some links here for your reference. If you want to pursue more research, you’ll want to start at Pubmed.gov. It’s a search engine for scientific research but don’t let that intimidate you – it works just like Google so you just type in something like “autism B12” or “autism and diet” etc.
START HERE:
National Library of Medicine (Pubmed)
I also suggest you Follow these pages on social media. There are hundreds if not thousands of other people to follow to help you learn more but start with these for sure. They represent the areas of diet, brain development, supplementation, parenting support, PANS/PANDAS and gestalt language processing.
@brainblossom @spoelstrachirocda
@tacanow @nourishinghope
@culturedfoodlife @neuroimmune
@navigateyourhealing @meaningfulspeech
@dreamingpanda1 @documentinghope
@moveplaythrive @specialneedshomeschooling
At the end of the day, my wish for my son has always been that he is happy and healthy. At 4 years of age, he was neither of those. Today he’s absolutely healthy, thriving and happy. I shudder to think how his life would be had I not veered from the mainstream medical approach.
Download a printer friendly version of the Opportunity checklist here.