Friday, 30 May 2014

Lies, Damned Lies and Autism Statistics

When used correctly, statistics are extremely useful to diagnose and solve all kinds of problems.  In the wrong hands, meaningless or mixed-up data can be portrayed as impressive statistics, on which other people faithfully rely, to form their opinions.

Clearly there is nothing new in this; the phrase “lies, damned lies and statistics” was popularized by Mark Twain (1835-1910).  The advent of cheap computers and desktop publishing has made it possible for just about anyone to crunch some numbers and make impressive looking tables and graphs.   Along comes the internet and all of a sudden, somebody’s idea can go viral and be quoted back to them later, as a “fact”.

This blog is based mainly on the blue skies research, being carried out at leading universities around the world.  I say “leading universities” because there are now so many universities/institutes, that not all academics are equal.  In the case of autism, it seems that the more someone publishes, the less likely it is to be worth reading.

So we have to filter out the bad science and just focus on the good.

Every now and again, I get redirected to the world of other people searching for autism treatments and then the floodgates open and I am awash in a sea of wonder cures, false promises and lots of statistics; sadly these are almost entirely the type of bogus statistics that Mark Twain referred to.

I do my best not to look at these statistics and endless articles in newspapers, based on them. But some basic statistics do matter, if you want to figure out your type of autism.

Autism affects males more than females

This seems to be agreed everywhere.  It seems that about 80% of cases are male and 20% female.  To me, it seems highly relevant that the 20% of females are skewed towards the more severe end of the spectrum.

In Retts syndrome, almost all cases are female; but this is because the male fetuses do not survive until birth.  So it seems again true that the female brain is better protected than the male brain; you would hope that this would have caught someone’s interest as an avenue of thought that might lead to a therapy, sadly not.

Is the Incidence in Adults lower than in Children?

Since autism is a lifelong disorder, why is it that people always focus on young children?  Where are all the adults?  The sad answer to this is that the adults tend to get forgotten.  As time passes, they are without their vocal parent advocates.

 Conclusions: Conducting epidemiologic research on ASD in adults is feasible. The prevalence of ASD in this population is similar to that found in children. The lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized

The above paper, from 2011, is based on research among adults in the community.  The researchers found the same incidence of autism, about 1%, in all age groups; it was just that in the older age groups the affected people had never been diagnosed.  They were either tagged as intellectually impaired at one end of the spectrum or “odd loners” at the other end.

If the incidence in adults is the same as in children, then all talk of an autism epidemic would be nonsense.  The US CDC autism incidence statistics would also be nonsense, rather than just a misrepresentation of data.

What percentage of people with autism are non-verbal?

This is a question that worries parents of very young children with autism.  But before looking for statistics, beware what people mean by non-verbal.  You might think this means kids who never talk, never say “Mum/Mom”, or “Dad”; but in fact plenty of parents refer to their child, who is not using 5 word sentences, as being “non-verbal”; they really mean “not as verbal as I’d like”.

Here is some data quoted by the Simons Foundation

“Roughly 25 percent of people with autism speak few or no words. A generation ago, that figure was closer to 50 percent. Most researchers agree that the decline is due to the recognition of more people with milder forms of autism, as well as to the advent of early intervention programs, that have helped more children develop language than in the past.”

What percentage of people with autism have mental retardation / intellectual disability?

This question is raised often by people, who feel the autism bandwagon has been hijacked by some of the very articulate people with Asperger’s.

The WHO (World Health Organization) does state that it thinks that 50% of people with autism have MR.  But of course what counts as autism to the WHO will not match what counts as autism according to the US DSM.  The WHO mean a more severe autism.

From the academic world we have this:-

“Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70–80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70–90% are of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003).”

Back to the Research

Now we come back to the focus of this blog, which is to find safe and effective drug treatments that improve autism.

While most of the blue skies research in this blog comes from top universities like Harvard, MIT and Stanford, when it comes to applied research we do drop down a notch of two.

At some point we enter the zone of pseudo-science and then complete quackery.
Where to draw these lines is subjective and it may be that an over-zealous practitioner may be mixing elements of good science, with elements of quackery.

Here again, we are confronted with statistics, this time from the impressively sounding Autism Research Institute (formerly linked to the DAN! doctor people, who then became MAPS doctors).

At first you might be thinking, WOW!  Just look at all those interventions to try.  Indeed you could spend many years, and much money, working through all these drugs, supplements and diets.

Mixed in the list are some really good ideas (like melatonin), but there are also some things that have been shown in serious clinical trials to be totally ineffective, like secretin and fish oil.

Have all the participants heard of something called the placebo effect?
All diets, it seems, regardless of which one, work wonders for 45% to 71% of people. 

As expected, chelation comes out well, but they miss the real point.  Chelating agents are all anti-oxidants; so if you suffer oxidative stress, chelating agents will all help you, but it has nothing to do with “detoxifying” you from heavy metals.

If you would like more from the same source:-

But beware; this is not an expert scientific review of the literature, done by an Ivy League university (any more than my blog is).  It is interesting and it does have some good points, but it is not quite the authoritative resource it makes itself out to be.   The author is at Arizona State University and has a Ph.D. in Materials Engineering, which does not mean he is not right, but it is an odd qualification to be co-leader of the Scientific Advisory Committee of the "Autism Research Institute".

I expect for some of the practitioners using these methods, there are financial incentives, like renting you a home hyperbaric chamber, and others are just well intentioned people trying to help desperate parents; but these are Mark Twain statistics.

I am with Dr Chez, if you have a non-verbal child, steroids may make a lot of sense to try.  The data from ARI would not support this, but of the 204 cases they report on, what where their symptoms? What kind of autism was it? Regressive/Early onset.  What was the objective? Treat SIB, stereotypy, hyperactivity?  Nobody knows.  This is Mickey Mouse medicine and part of the reason mainstream medicine continues to assume autism is untreatable.

My Conclusion

I will continue to focus on the fundamental research from very clever scientists, who you can identify from their educational background and where they now work.  The highly prolific publishers, sometime expert witnesses and people trying to sell you something, I will try to ignore.  

Whatever type of autism you are interested in, if you follow the underlying science, you have a great chance of making progress.

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