Showing posts with label Musings. Show all posts
Showing posts with label Musings. Show all posts

Tuesday, 23 April 2013

Do you call it Solfège or Solfeggio?

Unless you are a music teacher, you probably do not know what is solfège, or solfeggio.  I did not know what it was, but I am reliably informed that if you want to progress with your piano playing, you need to learn it.  The system has been in use as a pedagogical aid since it was developed by Guido D'Arrezzo in the eleventh century.

I have two piano playing sons; Ted, aged 12, and Monty, aged 9.  Monty, as you will know, has ASD.

Who do you think is going to be the first to learn solfège?   It’s going to be Monty.

Ted is not amused.

Tuesday, 9 April 2013

Heretic! Of course the world is flat

I am again recommending to you the excellent collection of scientific research published all in one book called Autism: Oxidative Stress, Inflammation andImmune Abnormalities, edited by Chauhan, Chauhan and Brown.  It is seriously expensive, but if you manage to read it, you will likely know much more than your paediatrician.

Assuming that most of you will not want to buy the book, I will be feeding you edited highlights over the coming weeks.

Today’s insight is about heresy.

Columbus's voyage to the Americas in 1492 and then Magellan’s circumnavigation of the Earth (1519–21) provided the final and indisputable proof that our world is spherical.    At different periods in time before this, the world had been thought of as flat, round, square and possible spherical.

In 748 the then Pope Zachery heard complaints that Vergilius (Virgil) of Salzburg, who happened to be both an Irish churchman and amateur astronomer, was teaching a doctrine about the “rotundity of the earth”.  There still exists the decision of the Pope, written in Latin; translated into English it reads:

"As for the perverse and sinful doctrine which he (Virgil) against God and his own soul has uttered—if it shall be clearly established that he professes belief in another world and other men existing beneath the earth, or in (another) sun and moon there, thou art to hold a council, deprive him of his sacerdotal rank, and expel him from the Church."

In spite of this very close shave, Vergilius survived and later became Bishop of Salzburg and was later canonized by Pope Gregory IX, becoming Saint Vergilius of Salzburg.

The insight is that the only way to prove to everyone beyond doubt that the world is like a giant football, was for someone to sail around it and not disappear off the edge.

Autism:  Die-hards, Heretics and Quacks

As you will have gathered, this blog is anti-quackery; but it is now also anti die-hard.  If English is not your first language, this definition might help:-

a person who resists change or who holds onto an untenable position or outdated attitude

When I started reading Chauhan’s book, I was very surprised to come across references to a now-discredited English doctor and researcher called Andrew Wakefield.  He is the one blamed for connecting autism with the MMR vaccination.  Some of the other scientists/authors seem to share his concerns that mercury in vaccines was indeed a cause of oxidative stress and that, as such, could reasonably be linked to autism.  That paper went on to mention that mercury has now been replaced by another metal, aluminium, but in much higher concentrations; aluminium is also known to be bad for the brain.  So I had to challenge my preconceptions about Mr Wakefield.

It seems that he raised issues that were already known to other researchers, but he just went a bit further and was more vocal.  He was then totally out of line with the currently accepted views of his profession and probably Big-Pharma as well.  So he lost his job, then the media drove him out of the country and in 2010 he was struck-off as a doctor.  He was branded a heretic. 

Now this brings me to another question, why is it in my trawl through the literature I have seen so few papers with British authors?  Does anyboby want to follow Andrew Wakefield?

Back to Chauhan’s book and the penultimate chapter; it is a paper by Dr Martha Herbert from the Department of Pediatric Neurology, Massachusetts General Hospital, Harvard Medical School.  I was shocked.  If Herbert worked in UK her days in a leading teaching hospital would be numbered.  She would be ridiculed and branded a heretic.

In the US there are plenty of people calling her a quack, but she has managed to keep a good job.  In other literature, she goes even further than in Chauhan’s book. I will summarize the essence of what she believes:-

·         The prevailing view that autism is a static, lifelong, incurable developmental condition is flawed.

·         Perhaps autism is not a unique and distinct syndrome

·         The etiology of autism may not be primarily genetic

·         Autism is a chronic dynamic encephalopathy
·         In other literature she goes all the way and says autism is curable

Martha Herbert has her own website.

Tuesday, 26 March 2013

Aspirations vs Expectations

A couple of years ago, I came across a very useful paper that helps deal with that nagging question all parents of autistic children probably have;  that question is of course what will the future bring?  The paper is called Counseling Parents Regarding Prognosis in Autistic Spectrum Disorder.  It is only three pages long and it is free to download.

It is written by a very experienced Neurodevelopmental Paediatrician called Dr James Coplan, naturally he is an American.  He has an excellent website and he has his own channel on YouTube.  There are 4 short videos about the history of treating autism and one quite heavy one about challenging behaviors in autism.  In one he comments that autism is 130 years behind most areas of medical science.  He certainly knows his stuff, but he is not a researcher like us. 

Coplan applies four premises:-

1.    Atypicality (how autistic you are) occurs along a spectrum from mild to severe.

2.    The observed severity of autism in the same individual varies with age.  Many children with ASD do experience significant improvement over time.

3.    ASD of any degree of severity can occur with any degree of general intelligence.

4.    The long term prognosis represents the joint impact of ASD and their cognitive ability; higher IQ leads to better outcome.

The ideal outcome is for child B, whose atypical symptoms were always mild and whose intelligence is average or better.  The core features of ASD break up into fragments, which diminish in severity with the passage of time.

A less favourable outcome is child A, who has severe autism, plus mental retardation (MR).  As time goes by, he continues to exhibit the same level of autism, plus MR.

Clearly most children will be somewhere in between child A and child B.


I learnt from using ABA (Applied Behavioural Analysis) that it is always important to aim high, but not so high that your child is going consistently to fail.  If you aim low, you are certain not to achieve much; it is common sense really.  Every day raise the bar slightly and as the months go by, you will surely see progress.  If you are too ambitious, the child will get too used to failure and your efforts will be counter productive.


I think it is best to leave the expectations to Dr Coplan and his framework.  Dr Coplan seems a bit fatalistic, he says that there is little evidence that the prognosis today is different to that in the 1970s or 80s. 

In my opinion, the tools available to parents today are far beyond the wildest dreams of parents in the 1970s; you just have to reach out, take them and apply them.  Rather than accepting a mediocre prognosis, do something about it.

Sunday, 24 March 2013

Great Minds Don't Always Think Alike

Today’s post may appear to be just ramblings, but rest assured it is another necessary piece of our jigsaw puzzle.

What do you think I have in common with the President of the United States?

A.    Peter and Barack are fans of the Discovery Channel show, Myth Busters
B.    Peter and Barack had a drink with both  Michael Bloomberg and Vladimir Putin

It was a trick question.  The answer is (A) and (B).
For those of you who do not have Discovery Channel at home, Myth Busters is a hit TV show filmed in San Francisco, where Adam Savage and Jamie Hyneman set out to test popular myths, to see if they are plausible, confirmed or busted.  Adam and Jamie worked in the Hollywood special effects industry, but they have very unusual backgrounds.  They have a great approach to testing myths/hypotheses and always start with an open mind.

If Adam and Jamie were to join us on our quest – they would probably call it a crusade – we would have valuable support indeed.

Cold calling and networking in Business, but not in Medical Science
Now I could write a book about cold calling and networking in the business world.  If you have a bright idea, you can use it to open doors in most parts of the world.  Like most things, it works best in America, but it even worked well in some former communist countries, just a few years after the Berlin Wall came tumbling down. Romania is a good example, still in my 20s, I managed to get one to one meetings with important people, including with two of the five richest people in the country.  From my flat in Kensington, I got summoned to meet Lord Rothermere, the last of the great English press barons, to discuss an idea.  The list goes on.

But either I have lost my magic, or it just does not work on doctors and medical researchers.  They are not interested to talk to me, I find this quite perplexing.   Maybe I need a white coat?

They seem to be very closed-minded, or just not interested in autism.  Even American researchers are not interested!  Even when they are working in the field of neuroscience.
I think the medical world needs some kind of shock from the real world.  It seems, at least in case of polio and malaria, they are getting just that.

Bill Gates, Paul Allen and Peter (me)
Next cryptic puzzle; what do Bill, Paul and Peter have in common?

Well, you surely know that Bill Gates is the man behind Microsoft.  You may not know that Paul Allen is the co-founder of Microsoft.   Paul also set up the Allen Institute for Brain Science, which he and his sister endowed with $100 million.
Now Bill Gates is applying his business acumen (and not inconsiderable fortune) to eradicating polio.  If you want some inspiration just listen to Bill talk about how he is going about eradicating polio.  He is applying business common sense, rather than any medical knowledge.  He is making great progress.  If you live in the UK you can watch the full 60 minute lecture on the BBC iplayer just search:-   Bill Gates: The Impatient Optimist - The Richard Dimbleby Lecture. If you do not live in the UK you can only watch access the short preview on YouTube.

There is so far only a very weak link between Peter and Paul.  Before starting this blog, but after watching Bill talk about polio, I wrote to Paul.  In essence, I said go talk to those French research guys about Bumetanide and put your millions to good use.  Well at least I got a polite reply from the Institute.
I have not met Bill;  maybe one day I will.  It turns out that Mike (Bloomberg) and Bill are now joining forces to eradicate Polio.

By the way, in case you did not know, Mike is Mayor of New York and founder of Bloomberg LP a leading global provider of financial data, analysis and news.  He is also a great guy (and my former client).

Well, does all this really fit together?  I think it does.  We need a little something from the Myth Busters (Adam and Jamie) and some more from the philanthropists (Bill, Paul and Mike).  I think it’s called inspiration !

As for Vladimir, well Barack might not agree, but I think he is doing a pretty good job over there in the Kremlin.

до свидания


Thursday, 14 March 2013

What's Up Doc?

Can you fix something without truly understanding it?
If you ask a brainy engineer, the type that designs jet engines or nuclear reactors, can you solve a problem without understanding it; the answer is likely to be negative.  If you ask the guy that fixes your car, he might say “dunno, but let’s have a go”.  I have never met a white coated medical researcher, so I cannot tell you how they would reply.
A long time ago I gave up on expecting experts to fix types of unusual problems.  Like the illuminated “engine malfunction” light that sometimes appears in my car, like why did the radiators in my house bang and clank as they warmed up and later as they cooled down (it's not air in the system).  Why did my environmentally friendly solar panels make a noise like they were about to explode? The list grows longer.  Having solved all these problems and some others, I moved on to healthcare.  Why did my chest hurt when I sneezed? very funny to watch, instead of my reflex being to cover my mouth, I would hold my chest.  Then I even started giving medical advice to my Mother, a doctor herself.  But I digress.
If somebody had asked me, prior to Christmas 2012, "so Peter can you fix Monty?" then the best I could have said would have been something dull like:-
Autism is an incurable condition that you can manage, but you cannot reverse or cure it pharmacologically. Maybe one day there will be a cure, but too late for us.  Using behavioural techniques Monty has made great strides forward.  He can walk, run, ski, swim, read, write, do basic addition and subtraction.  He has emerging understanding of Wh- questions.  When asked a specific question he may make a short verbal reply, or he might totally ignore the questioner and the question.  A lot depends on who asks the question.  He sometimes suffers from stereotpy (aka stimming) particularly at school and this can makes it hard to complete simple academic work.  He may sometimes disrupt the class, even though he has a 1:1 assistant.  When his brother, Ted, asked if Monty will ever learn to drive I answered “maybe, maybe not, let’s hope for the best”
Three months later, and two months after everybody now knows about the Bumetanide Epiphany, my wife says to me out of the blue “Do you think you can really fix Monty” and even “What’s up, Doc”. Well, I never said I could or would fix him, but at least I am going to have a dam good try. Ted’s odds of getting Dad’s old Triumph Spitfire all to himself are slipping daily from odds-on favourite. If they slip to 50% my job will be complete.
So, can I fix something without truly understanding it?

Well, quite possibly, but the more I understand the problem, the better are my chances.

In neurobiology nobody fully understands the subject.  It is a work in progress. By the time Monty and Ted draw their pensions, it will still be a work in progress.



We speak your language - Ми говоримо ваш језик

I am pleased to  see that most people reading this blog are not native English speakers.

Dule ("Doolay", for those English speakers)  has very kindly offered to translate the useful parts of the blog for his friends into their language.  The nice people at Google have fortunately made that job a little easier, but as you can see below, they know some languages much better than others.
This blog has a translate feature.  Just look under the duck on the skateboard and you will see a Google Translate button.  (Sadly, the Google search this blog feature is not yet working)


Select Language  

 Click the little down arrow and take your choice.


Ми говоримо ваш језик

Видим да већина људи читају овај блог нису Енглески матерњи језик.

Овај блог има за превод функцију. Само погледајте под патком на скејтборд и видећете Гоогле Транслате дугме.


         Изаберите језик

Кликните на малу стрелицу надоле и да свој избор.
Nous parlons votre langue

Je vois que la plupart des gens qui lisent ce blog ne sont pas de langue maternelle anglaise.

Ce blog a une fonction de traduction. Il suffit de regarder sous le canard sur la planche à roulettes et vous verrez un bouton Google Translate.


Sélectionnez la langue

Cliquez sur la petite flèche vers le bas et faites votre choix.
Google parle très bien français. Moi, je fais de mon mieux. Mais je peux apercevoir quelques erreurs. (traduit par Google)






If you are looking for a clever comment in Japanese, dream on !