Not Just a River in Egypt

One of the most unfortunate features of autism and an autism diagnosis is the time lost to denial and chasing tails in the beginning. It’s easy to do because an autism diagnosis does not come from blood work; the diagnosis is based upon a conglomeration of symptoms and missed milestones.

Despite the odd promotion in the mainstream press lately of the idea that parents are seeking autism diagnoses because it’s the cool trendy new “thing,” no one really wants an autism diagnosis. Most parents will recognize at some level that their kid isn’t hitting milestones, is not progressing, or is even regressing, but few people want to talk about it. So the issues tend to be very obvious by the time parents bring their concerns to a doctor.  Often it is easy for the doctor to  brush those concerns off, saying that its nothing.  Lots of people get the “He’s a boy, and boys develop later” party line.

I remember finding the Age of Autism website a good year before my son regressed. I spent a lot of time over at Mothering.com and was well versed in the concept of vaccine damage.  In hindsight, I had a little bit of precognition going on. If only I had listened to my gut. We waited until our son was two before starting shots, then did one at a time. I breastfed for 35 months. We did everything “right.” So when he got sick shortly after his third birthday and subsequently regressed, I was entirely in denial that it could be autism. After all, the autism regression was supposed to be before age three.

The pediatrician sent us for occupational therapy and speech therapy. When that had no real results, we did a sedated autditory brainstem response (ABR) hearing test and MRI. Neither of those told us anything. I insisted on a neurologist appointment, and the pediatrician sent us off for a 20-minute EEG and got us into see the neurologist about 10 months after Dominic regressed. The neurologist gave us a diagnosis of  autistic regression syndrome. We left that appointment and went home devastated. At that time, neither my husband nor I had any idea how much of a true marathon we were facing. It took a couple of months to wrap our heads around the idea and get started healing. I was really resistant to changing his diet to gluten, dairy, and soy-free, and in hindsight that makes me laugh because, of all the things we’ve done, changing his diet turned out to be the easiest and cheapest. Seven years and over a quarter of a million dollars out of pocket later – we are still working!

I can’t even go out in public these days without handing out my calling card, which has my own blog, TMR, and IonCleanse by AMD links.  Kids with rosy red cheeks, eczema, toe walking, obviously stimming . . . I give their parents my card.  Most aren’t quite ready to understand what the red flags may mean.  What makes me sadder are the parents with older kids who have clear issues (the loose floppy joints, difficulty with balance and motor skills, obvious social interaction delay) and absolutely refuse to consider things that might help their kids.  Maybe it’s because if they do something that might help, that means they are admitting that there is an issue.  It makes me pull my hair out in frustration.

Imagine how much time I could have saved if, the appointment after the flu that caused my son’s regression, the pediatrician had said to me “you are starting a regression and this is what you should do to stop it,” and handed me a packet of resources that included detoxifying, changing his diet to get toxic stuff out, and links to TMR, Age of Autism, TACA, Generation Rescue, etc.

Imagine every diagnosis coming with a flow chart of the methylation cycle and detox cycles and a list of options for places to start.

Even better, imagine if every baby had a DNA swab at birth to checking for genetic mutations that affect the ability to detoxify or methylate.   Imagine that, in the hospital, parents were told “Your child is not a candidate for vaccination and is medically exempt from all of them because his or her genetic structure shows he or she could be damaged by them,” and provided with a medical exemption then and there.

None of those is likely to happen unless we change our culture significantly.  That means we, as Thinking Parents and members of this global village, have an obligation to let other parents know about the red flags when we notice them. It can be difficult, and you will have to tread lightly or you can send someone further into denial. But maybe, just maybe, if enough caring people raise concerns, a lot of parents and children can save a lot of time that would otherwise be lost in denial.

Please keep TMR’s red flag blog series in mind and when you see children who have several, share the articles.   If we could get parents of newly diagnosed children to skip the year of tail chasing and denial, odds are good their children will be healthier for it and may have a much easier time with recovery.

~ JuicyFruit

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