The Autism PolyPill 5 years on from December 2012

2^nd WOW!

Still autistic, but less so, and no longer cognitively challenged.

It is exactly five years since Monty, now aged 14 started his Polypill therapy. At first it was just bumetanide, but shortly thereafter NAC and atorvastatin were added, more followed later.  All without any side effects.

I received Monty’s end of term school report just before Christmas and it bears little resemblance to what he received back in 2012. Now it does not look like the report of someone who is cognitively challenged. Almost all the grades are As; these are his best ever results and unlike 5 years ago, these are the same tests as taken by his NT peers, not an easy version. 

At the beginning of this first year in high school, there was a view that Monty should not be there, that he would fail to cope and later have to leave; he has proved otherwise.  None of this was malicious; it was just that the head of the high school used to teach in the junior school and has known Monty since he was four years old. Back then, and until he was nine years old, he was seriously challenged, academically. The post-Polypill Monty came as a big surprise, he is still autistic, but now academically functional.  He is now never disruptive and behaves like an attentive model student, just one that does not talk much.

Monty’s assistant recently asked me why, since some doctors do read this blog and apply it, don’t more doctors now treat their kids with autism? She mentioned a top local neurosurgeon who has twins with severe autism; why isn’t he treating his own kids? If you can do it, why can’t he? My answer was that a neurosurgeon is not a neuroscientist.   His job is quite primitive; he drills holes in people’s skulls and pokes around for visible defects in the brain. Treating autism is about tweaking tiny things like ion channels that you cannot even see. Being a neurosurgeon does not really help much, unless you read the neuroscience literature, which he likely does not.  

Wow Moments

I do like “Wow moments”. They do not come very often, the last one was four years ago when I first saw a little yellow pill (Verapamil) make an extended episode of self-injury, melt away in front of my eyes. That was like winning the Lottery and this therapy continues to have the same effect.

A “Wow moment” occurred in late December when I opened the end of term report, of Monty’s NT big brother, who attends the same school.  Monty’s grades are better. Yes, Monty is in year 7 and big brother is in year 13, his final year of school. You should not compare one sibling with another sibling, but nobody would have dreamt that a boy with classic autism would ever outshine his intelligent NT brother academically, under any circumstances. I think that deserves a “Wow”. Even big brother was impressed by little brother.

Nowadays an autism diagnosis usually is not associated with MR/ID; it is much more likely to be better described as a variant of Asperger’s. If you have Asperger’s there is no reason you should not aim for College/University. Unfortunately that is not Monty’s case, he has strictly defined autism (SDA), meaning more severe biological dysfunctions and his school reports from 5 years ago reflected that. He could not function academically; school was more for “socialization”.  People with SDA usually do not make it past the basics of school academically.  Where we live, autism = SDA and severe autism means something extremely challenging, so I find it very strange to read comments on the internet written by people claiming to have severe autism themselves.

One medical researcher recently asked me how effective is sodium benzoate (NaB) proving as a cognitive enhancer. All I could say was the current level of academic performance is shocking everyone. We had teachers thinking the assistants were boosting his test performance, so we all agreed to be super careful not to give help during tests. So now they are 100% his work, before I think it was 90% his work with some “hinting”.  I cannot say with certainty whether NaB helps or not. I stopped for a week over Christmas, and I concluded that there may well be a difference.

The extreme case of “hinting” is so-called facilitated communication, when the assistant ends up doing 90% of the work. The result is an illusion of what you would like to think the child is capable of, rather than reality. We do not need any of that.

There are also prompting methods like RPM, but at the end of the day what matters is what the child can eventually achieve entirely unaided. It does not matter if they type their work, or handwrite it.

Is the OAT3 inhibitor helping? For the last few weeks I have used coffee flavanols to boost the pharmacodynamics of bumetanide (by delaying its excretion). 

There are still plenty of ideas I have not yet implemented (RORα, PDE4 etc.) but the current PolyPill has delivered results far beyond my expectations. I do not think it is realistic to go from strictly defined autism (SDA) to entirely NT. The target I mentioned long ago was to go from SDA to something like Asperger’s. Monty is never going to be quite like his older brother, but after 5 years he now evidently has a typical level of IQ, and most importantly he can apply it at school and in daily life.

This Christmas Monty made his way through the self-scanning passport control at the airport and when randomly selected for the whole body scanning machine, he coped without incident.  Air travel is now a highlight of a trip and the more turbulence the better.

Now to the next five years.

The open question is whether Monty can obtain formal educational qualifications. In the English system there are externally assessed exams at age 16 (year 11) and at age 18 (year 13). Monty’s class group are two years his junior, so he will be 18 at the year 11 assessment. Years ago our piano teacher, who only teaches people with special needs, was pretty blunt about the fact that none of her kids leave school with formal qualifications, except sometimes in music. 

The situation varies greatly depending on where you live.  In the US things are very different and if you have an IEP (Individualized Education Program) and attend high school, you automatically seem to “graduate” high school with some kind of diploma. Many people with an IEP in the US do not have severe learning disabilities and they graduate with the standard diploma.

Monty has never had an IEP because he does not go to a school that offers them. In effect he has had a very customized education program for more than a decade, just it was run from home.