Treating Autism – Destined to Remain a Fringe Activity?



When I started this blog I was actually serious about a widely available Polypill for autism.  Over time I accepted that this really is an idea ahead of its time, so my Polypill has become more an example of personalized medicine.  I was pleased that at least one other very different Polypill solution exists to treat a separate (Swiss) sub-type of autism, but based on the same science. No doubt more exist, but remain hidden.

There is of course also the Dr Kelley, formerly of Johns Hopkins, mito-cocktail for regressive autism. I think this could be further improved, just based on what has been covered in this blog.

Instead of producing a Polypill, I decided to continue my research and take the much easier option of writing a book about it, when I have “finished”.  So another cranky book on autism, but my one.

As I collect together all the ideas in this blog and in the unpublished posts, I also started to fill in gaps in the bigger story.  I cannot ignore the hundreds of people already “treating” autism and there are numerous books on the subject, most of which I would put in the cranky category.  Organizations like DAN! (Defeat Autism Now) have come and gone, but the US has numerous organizations like TACA, MAPS, Autism One, Generation Rescue etc, all with their own treatments and literally hundreds of practitioners, be they Doctors of Medicine, Doctors of Osteopathic Medicine, Doctors of Chiropractic, or Doctors of Naturopathic Medicine.  This all makes most mainstream doctors cringe, including most of my doctor relatives.

So are there any autism doctors out there I would pay my money to consult? I thought about it and actually there are not.  I would be happy to have a coffee with Dr Frye in Arkansas, Dr Chez in Sacramento, or talk bumetanide with Dr Lemmonier, or even talk inborn errors of the metabolism with the Dr Karnebeek in Vancouver.  Another interesting one is Knut Wittkowski, the biostatistician from an earlier post, whose noble aim is to use his statistical analysis of genetic studies to prevent mutism in future autism.  In effect, by giving Mefenamic acid (Ponstan) for a few months at the age of two you might switch trajectory from non-verbal severe autism towards Asperger's type autism.(www.ASDERA.com)

There are numerous articles published to dissuade parents from trying to treat autism, like this new one from the Simons Foundation’s editorially independent Spectrum News:-

Why trials of autism treatments have a placebo problem
I agree with 90% of this article and would have agreed with 100% of it just five years ago.

I did actually suggest to Spectrum News that they consider publishing at least one article about translating all that science they write about into usable therapy.  They replied that they considered the idea, but do not want to pursue it.

So back to the book, which is slowly taking shape.

I did wonder just how to position the book and how much science to load it with.  I ended up deciding to make it as readable as possible and just have the heavy science in one part, which people can skip altogether if they choose.  I did originally talk to a scientific publisher, but I think their idea of an autism science book may be rather less mass market.

For me the important thing is that I have found therapies that reduce the severity of my son’s autism and improve cognition.  These improvements are reversible, as they should be. It is a bonus that many other people benefit from some of the mentioned therapies and a small number of people respond in a near identical way to my son.

The concept of treating autism will only gradually start to become mainstream when the first drug is approved by the FDA or the EMA (European Medicines Agency), so probably Bumetanide in Europe and possibly CM-AT in the US. Even then, I do not see your local doctor in a rush to prescribe these drugs; they will likely only go to those who read up on it and insist on having them.

Autism will remain highly difficult to treat and because it is not degenerative and does not directly kill you, it will generally just be avoided.  I really do not blame such doctors; they have more to lose than gain.

So for the foreseeable future treating autism will remain a fringe (or cringe) activity, where you are best off self-treating. You have something to gain and nothing to lose.








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