My son was officially diagnosed with autism in 2007 at the age of 4. Getting the diagnosis was a process of course as we had to wait six month for the appointment and like most other families, it felt like life was going off the rails for many months prior to getting the referral.
My son had what I would call an “atypical” regression into autism. Knowing what I know now, he actually had PANS (Pediatric Acute Onset of Neuropsychological Symptoms) which then morphed into behaviors that would match the criteria for Autism. In 2023 it’s hard to convince doctors that PANS/PANDAS exists so you know it wasn’t even a consideration in 2007.
My son was speaking but not communicating, he was stuck in scripting and echolalia. But he would learn new words and labeling – he just couldn’t use them in a traditional way. He was not in his own world, in fact he was observing and aware of EVERYTHING in his world. He was intensely attached to me. He screamed a lot. He was horribly constipated. He was eating very few foods. His tummy was super extended but you could tell he was very thin. He had dark circles under his eyes. He couldn’t get to sleep or stay asleep. He rarely smiled or felt joy. He was developing extreme rituals/OCD around what he did, what I could do, where things could be placed in the house, the route to be driven etc. This is what life looks like when it’s going off the rails.
The diagnosing physician was in a different state from where we lived so he didn’t have much advice to offer other than “don’t dramatically change your lives around, just take him home and love him” which is a whole other blog post! Um sir, I will move mountains for this kid AND love him. It’s so bizarre how that line seems to be standard practice for doctors. So, I walked out of that appointment with my soul crushed, idiotic advice from the doctor and a folder with some printouts. And little to no hope for the future.
A day or so after that appointment I looked through the folder and there was one sheet that summarized treatments, medications and supplements that other parents had reported as being helpful for their autistic kids. It was published by the Autism Research Institute. And that document changed my son’s life.
On the summary sheet, parents reported that they had good success with using Melatonin to help their kids sleep. In 2007 I was living a Standard American Life. I had never heard of melatonin. But if other parents said it helped their kids, wasn’t it worth a try? At this point it was taking 2+ hours for my son to fall asleep and that was with a parent laying in the bed with him (and him subsequently waking up when the parent got up to leave, starting the entire process over again).
Not knowing if or how my son would react to the melatonin, we gave him some a couple of hours before his usual bedtime. He was laying on the floor watching a DVD (and by watching I mean watching the same clip over and over again as one does when they have PANS/OCD), the lights were on and his dad and I were watching TV. I realized about 15 minutes after giving him the melatonin that my son was being really quiet so I looked at him more closely and HE WAS ASLEEP!!!! Was this for real?!?! It was and after that success, you can bet I went back to that summary sheet to see what other things parents had discovered that helped their kid.
The next intervention to try was a Gluten and Casein Free diet (GF/CF). I didn’t tell anyone we were doing this diet yet within a week, people who knew Spencer remarked at how different he was – calmer, more engaged etc. And he was “suddenly” able to pee/poop on the toilet. Let’s just say it was GAME ON after that. He has benefited from a slew of other “alternative” interventions and treatments and I still watch for new ones and research the hell out of them and then discern if it’s something that might be helpful.
In the last decade or so, new moms to this life aren’t aware of this research document from ARI and they are in that panic-zone without a lifeline as to how to make things better. There is almost TOO MUCH INFORMATION out there for them to process about how they can improve health and outcomes. They then fall into a state Decision Fatigue which leads to poor discernment or just inaction.
I’m so passionate about how this compilation of information helped me and many others that I’m spotlighting it here to resurrect its use. Don’t just look at the charts and start implementing things, really dive into understanding the WHY AND HOW so that you can better discern what’s going to be right for you and your child. My experience has proven there is no silver bullet, but there are lots of gems that will move health forward and the most effective gems aren’t under patent so it’s sometimes hard to find information about them.
The full summary document along with citations can be found HERE.
Today my son is 20 years old and he is very healthy although we do still have a couple of medical issues that need to be monitored and managed. His cognitive and developmental growth has absolutely exploded in the last 3 years. He’s funny, he’s active, he’s super smart and he’s happy. It’s never too late to improve health or to change the brain.
