An Autism Anniversary

Today is the 22nd anniversary of my son’s diagnosis with autism.  It is always a day of mourning for me:  8030 days of my life spent failing my Alex.  Yes, of course, that sentiment comes from the irrational and emotional part of me.  Rationally, I know perfectly well that I have done everything within my power to help him and that it’s medical science that has failed us.

Outside of the obvious, what upsets me the most is the lack of progress.  Sure, there are bits and pieces that have been discovered about this or that, none of which translates into meaningful treatment for the people already affected.  22 years later, 2 antipsychotic medicines are still the only on-label “treatments” for autism…and everything that we know helps sometimes, from diet, to helminths and probiotics, to vitamins like B6 and B12, and so forth, is still all-too-often considered quackery by mainstream medicine.

And what do I read this week, that are the big headlines in autism?  It’s salt in the wound:

1. A genetic study out of MIT that has “…identified a molecular mechanism that appears to undermine the ability of neurons in affected mice to properly incorporate changes driven by experience.”  And this gene accounts for a whopping:  “up to 1 percent of autism cases.”[i]

2. Or this, out of the University of California, Davis, which is one of the leading autism research centers in the country:  “Researchers have found that typically-developing children gain more neurons in a region of the brain that governs social and emotional behavior, the amygdala, as they become adults. This phenomenon does not happen in people with autism spectrum disorder (ASD). Instead, children with ASD have too many neurons early on and then appear to lose those neurons as they become adults.”[ii]

Yes – there is nothing that is going to cheer me up more than reading about how my son’s brain is irreparably abnormal.

Another week gone, #1144 since Alex was diagnosed, with nothing to help my son.

And yet… no one will fund a study on autism and helminths, in spite of the fact that, according to Dr. William Parker’s (at Duke) research: “Physicians reported that the majority of patients with autism and inflammation-associated co-morbidities responded favourably to therapy.”[iii]  No one will fund a large scale study on the Specific Carbohydrate Diet, which the Autism Research Institute’s parent rating data shows helps 71% of children on the spectrum.[iv]  Two things which dramatically alter the gut biome.

Is anyone listening?

I had a phone consult with one of Alex’s doctors yesterday. He said the same thing I say to myself every day, “There’s always a choice.  You can keep trying, or you can not keep trying.  I say, we keep trying.”

So, day 8031…here we come.

____________________________________________

[i] http://news.mit.edu/2018/mit-study-identifies-important-role-specific-gene-16p112-deletion-autism-0321

[ii] https://www.sciencedaily.com/releases/2018/03/180320141331.htm

[iii] https://www.cambridge.org/core/journals/journal-of-helminthology/article/practices-and-outcomes-of-self-treatment-with-helminths-based-on-physicians-observations/4B7A97234FCC40EDC958090C80A3AAEB

[iv] https://www.autism.com/pdf/providers/ParentRatings2009.pdf


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