Autism – Getting Lost in the Translation

I think most lay people would be surprised to know that literally tens of thousands of scientific papers have been published on autism and yet not a single drug has been approved to treat core autism.

Surely there must be some value in all this research, that can be extracted today?

A reader recently sent me a link to an excellent lecture about propionic acid in autism.  The first part of the lecture was much more general and concisely summarizes what we know about autism.  We know a vast amount; it just has not been translated (applied).  Click below for the video.

Source:- American College of Nutrition

Translation

Alli from Switzerland, a medical reader of this blog did raise this issue a while back.  Why has the vast knowledge about autism not been translated across into medical therapies?

Her conclusion was the same as mine; don’t wait, do the translation yourself.  This is of course easier said than done, because there are wide variations in what causes autism.  Not surprisingly, her effective therapy is very different to mine.  In fact almost nothing that helps my son helps hers; but that is of course the point, there isn’t one autism.  There are thousands of variations, within which fortunately there are some clusters.

These are the elements of that therapy:-

·        PAK1/WNT inhibitor

·        Longvida Curcumin / J147  as cognitive enhancer via mtor inhibition

·        Ibudilast, a Pde4 inhibitor, as a modulator of microglia

·        Sodium Butyrate 500mg

·        Propranolol 30mg as PI3K/Akt/enos/vegf inhibitor

·        Garlic, to moderate Cytokine related autism flare ups

·        L-Theanine to regulates hyperactive behavior

·        Syntocinon (oxytocin) to improve social awareness

·        Biogaia gastrus probiotic (which down regulates TH1 and upregulates IL-10)

As in my case, there are flare-ups in symptoms and they are accompanied by loss in cognitive function.

Alli points out that dosage is key (paradoxical effects can occur at lower or higher dosages) and that some components of the treatment should be taken alternatively.

We also have the UK paediatrician who stumbled upon the fact that moderate dosage of baclofen is a remarkably effective therapy for the majority of people with Asperger's and shared that on this blog.  This does not appear anywhere in the literature and that doctor did not want to publish a trial, so it will remain hidden, except to readers of this blog. The more potent R-baclofen is being studied for more severe autism, but it is a research drug.

For various reasons mainstream clinicians do not publish their autism therapies, this was also the case with autism secondary to mitochondrial disease (AMD) where the detailed knowledge from Johns Hopkins does not appear in any medical journal.

In my post on the history of autism we saw that way back in 1877 there was an effective autism therapy (then being used as an epilepsy therapy) by a Dr Dickinson at London's Great Ormond Street Hospital.  He used potassium bromide which modifies the effect of GABA in a broadly similar way to Ben-Ari's use of Bumetanide today, that I promote on this blog. 

Likely other discoveries have also been lost.

Cancer Research

Cancer research is being translated into clinical use and so numerous new drugs are being developed.  As I have pointed out before, many of the affected pathways in some autism are shown to be affected in some cancer.  This means some new drugs can potentially be used to treat both conditions.

The idea of sub-types in cancer is now widely accepted.  Therapies can only be effective if used in the specific sub-type of the cancer.  The same applies to autism. The same applies to epilepsy.

The overlap between cancer genes and autism genes is very clearly shown in a recent graphic on Spectrum News (Simons Foundation). More food for thought.

Note WNT. mTOR, AKT, P53 etc.

  

Dozens of autism genes have cancer connections

Conclusion

It would be very helpful to gather together the combination therapies of other parents who have followed the science and applied it to an unrestricted palette of drugs/supplements that exist today.  There must be other people who have successfully done this.

Some OTC therapies are indeed very helpful, but full access to pharmacotherapy is needed to effectively translate science into therapy.  

There are of course DAN/MAPS type doctors in North America.  Some of them have some clever therapies, but there is also a great deal of nonsense and the priority appears to be making money rather than translating science.

I do get people writing to me with various theories and it is always important to keep an open mind. It looks like all truly effective therapies are reversible, they are not curative or disease changing.  If you stop the therapy you gradually lose the benefit. 

Only radical therapies, like the one below, are likely to be curative and only partially so in autism.  I do not see anyone giving high doses of chemotherapy drugs to two and three year olds any time soon.

MS breakthrough: Replacing diseased immune system halts progression, allows repair