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.

Garbage Can Model of Autism Research

Stanford University vs. Peter (INSEAD)

I only remember two things from my BIO (Behaviour in Industrial Organisations) class, many years ago at Imperial College in London.  Both were mildly amusing.

The first was that lecturer thought it was wonderful that the head of my engineering department would sometimes come to work with his things in a plastic shopping bag, rather than in a smart briefcase.  The rather lefty lecturer of this token, non-technical, course thought the highly paid Professor was truly “one of us” and he was demonstrating this with his choice of bag.  In reality, I think he just picked up what was nearest to his front door and he just did not care if somebody saw him walking down Exhibition Road with a Tesco bag.

The second thing was the wonderful sounding “Garbage Can Model of Decision Making”.  The more I read about autism on the web and in the literature, the more I think about garbage cans; so I decided to go back and see what that model was all about.

 

The Garbage Can Model of Decision Making

The model was dreamt up by three guys (Cohen, March & Olsen) at Stanford University in 1972, and I suppose that is a big part of why people got to hear about it.  It is frequently misunderstood; I think that my lecturer at Imperial College had decided it was really about situations when you have an answer and are desperately trying to find the question.  A good example of that is hyperbaric oxygen therapy.  We all know it exists, but other than for deep seas divers and fighter pilots, what is it for?  Well, the people who own these machines have been seeking new people to treat for decades.  They have the therapy and they just need to have a diagnosis, so they try autism.

The real garbage can model seems to be more about justifying bad decision making with a fancy name.

The Stanford three started by looking at how large organizations function.  They found that they operate on the basis of inconsistent and ill-defined preferences.  Technology is unclear and the participants in decision making come and go and they vary in how much time and commitment they have got. This results in organized anarchy.  Sound familiar?

The garbage can model is based on the assumption that decision making is sloppy and haphazard. Decisions result from an interaction between four independent streams of events: problems, solutions, participants, and choice opportunities.

From the horse’s mouth (James March) in the Harvard Business Review, October 2006:-

We were operating at two levels. On one level, we were saying that choice is fundamentally ambiguous. There is a lot of uncertainty and confusion that isn't well represented by standard theories of decision making. Opportunities for choice attract all sorts of unrelated but simultaneously available problems, solutions, goals, interests, and concerns. So a meeting called to discuss parking lots may become a discussion of research plans, sexual harassment, managerial compensation, and advertising policies. Time is scarce for decision makers, though, and what happens depends on how they allocate that time to choice opportunities.

On the second level, we tried to describe the way in which organizations deal with flows of problems, solutions, and decision makers in garbage can situations. The central ideas were that a link between a problem and a solution depends heavily on the simultaneity of their "arrivals," that choices depend on the ways in which decision makers allocate time and energy to choice opportunities, that choice situations can easily become overloaded with problems, and that choices often can be made only after problems (and their sponsors) have moved to other decision arenas and thus typically are not resolved.

In our minds, the garbage can process is a very orderly process. It looks a little peculiar from some points of view, but it isn't terribly complex, and it isn't terribly jumbled. The good thing, I think, is that our perspective has opened up the possibility for people to say, "That's a garbage can process" -- meaning it's an understandable process in which things are connected by their simultaneous presence more than by anything else, even though they look all mixed-up.

 

So what does this tell us?

Well I think on the one hand, it is a complete load of nonsense; but on the other hand, it seems an all too familiar unstructured, ill-defined approach that means problems do not get solved properly and so bad things do not get changed.

It also helps explain why most successful organisations are not democratic at all, they have much more in common with dictatorships; but at least they get things done.

  

Peter’s Garbage Can Model of Autism Research

Don’t get me wrong, there is some truly excellent research; but there could be a lot more and it could be far better coordinated and integrated.  Here is my garbage can model.

 

 

Cortisol, AVP, Oxytocin - Part II Stress Reactivity Model

I think today's post is going to be one of my better efforts.  We are continuing with the theme of Cortisol, depression and stress; but we are going to add two further chemicals, both "social neuropeptides".

The reason than today's post is worth reading is that it will bridge neurobiology and neuropsychology.   For me at least, psychology is light reading whereas biology needs more thought and understanding.  A social neuropeptide is a nice term not invented by me; it seems to come from Dr Stein from the University of Cape Town.

Rather than understand everything about human hormones, we are just trying to understand stress and coping mechanisms, so that we can reduce or  just better manage autistic behaviours. 


Cortisol

Cortisol is a hormone that is very easy to measure; saliva samples will do just fine.  Cortisol levels, or changes in cortisol levels, tell us about how the body is coping with emotion stress.  We are not talking about oxidative stress, but clearly there is direct linkage between the two.

We know that cortisol is a hormonal body clock (it maintains diurnal rhythms), cortisol levels should peak 30 minutes after waking, decline rapidly in the morning and then reach its lowest level in the evening.  This is well illustrated in the figure below, from an excellent study by Vahdettin Bayazit from Turkey.  He was studying the effect of exercise and stress on cortisol levels.

 

Children with ASD are known to have atypical response to stress and some have dysregulation of diurnal rhythms and abnormally high evening cortisol levels.  Among children with ASD there are significant individual differences, so the level of dysregulation is variable.  Note that many children with ASD have sleeping disorders; not surprising really if their body clock is malfunctioning.

 

In Bayazit's study he comments:-

"The more unexpected finding was that the evening values (of cortisol) for the children with autism tended to be consistently elevated in comparison with the neurotypical group."

I do not find this result surprising; in fact I would expect it.

 

He goes on to tell us that it is known that older children with depression have altered hormone levels, including hypersecretion of cortisol in the evening.

 

Now back to a stressful event.  In Turkey, a group of high functioning children with ASD were given a public speaking task; their heart rates and saliva cortisol were measured, before, after and during this "stressful event".

 

 

 

 

All we need to note is that the stress tended to cause a spike in cortisol level.


Stress Reactivity Model

Now we combine biology with psychology.  I took an existing model from an excellent book called "The neuropsychology of Autism".  Chapter 22 has a paper by Suma Jacob et al; she provided the biology and I just added the psychology (the opposite of what you might have expected)

 

 

 

 

This model shows how the equilibrium in managing stress is hopefully maintained.

The two little interlopers on the chart above, oxytocin and AVP are social neuropeptides.  Oxytocin is seen as beneficial; it reduces stress levels and gives a feeling of wellbeing.  AVP (Arginine Vasopressin) works in conjunction with CRH (Cortisol Releasing Hormone) to control the release of cortisol.  AVP seems to work in a "bad" way, in that it exaggerates/magnifies natural changes in cortisol.  So if you have a lot of AVP, a small spike in cortisol would become a big spike in cortisol.

Both AVP and cortisol have numerous other functions in the body. For example AVP is also known as the antidiuretic hormone (ADH) and a version of it is used in therapy in extreme cases of bedwetting by children. Whoever designed the human body was either short of chemicals, or likes to play practical jokes.

We already learned in Part I, that you can reduce your own level of cortisol just by singing.  It is reassuring to know that you do not always need drugs.  There are in fact other ways that you can maintain your own homeostatis and reduce cortisol.

A clever clinical psychologist from the University of Zurich, called Markus Heinrichs,  has provided us with an excellent study that compares the effect of social support vs oxytocin as regulators of stress.  What he did was to create two groups of people, in one group each subject brought along their best friend; the other group all came alone.  Then each subject was put through this stressful process:-

"During the introduction to the TSST (Trier Social Stress Test) they were then told that they would be required to give a 5-min mock job interview to an unknown panel (consisting of one man and one woman) on personal suitability for a job and to enumerate their strengths and qualifications in an unstructured manner, followed by 5 min of mental arithmetic performed out loud. To increase task engagement, the job description was matched to each participant, taking into consideration his own individual goals and aspirations. The panel of evaluators were presented as experts in the evaluation of nonverbal behavior."

The subjects were typical males in their early 20s.  Half the subjects had social support of a friend being present, and then each group had either a placebo or had a dose of oxytocin.  Here are the results:-

The base case is the "No social support + placebo".  This shows the highest increase in cortisol (i.e. stress).  The calmest group had "social support + oxytocin".  Of great interest is that the "social support + placebo" ended up less stressed than the "no social support + oxytocin".

This experiment showed the clear positive effect of both social support and oxytocin.

So in the stress reactivity model (the blue one up top) I decided to add social support and singing.  Clearly there are plenty of other social/psychological strategies that would likely have a similar cortisol reducing effect. 


Another dose of cortisol will come shortly in Part III.






 

Cortisol, AVP, Oxytocin - Part I Depression & Stress

Today starts a mini-series inspired by a reader’s comment about depression.  Angie, from Australia, pointed out that while the kids with ASD might not be depressed, many of the parents certainly are.  Not only will we address Angie’s point, but we will extend it a little and show how this can also help in our quest for the grail.

Many people have stressful lives, but some have discovered a special way to overcome this.  I was reading an English newspaper recently and there was an article about a celebrity cook, Nigella Lawson, who is very popular on the BBC.  While Jamie Oliver appears not to overindulge on his own cooking, it appears that Nigella does. Nigella was giving her tips to losing those excess pounds or kilograms.  The interesting part was not the treadmill in the spare room, but her comment about singing extremely loudly while using it.  

Here comes the science part.  Cortisol is an important hormone; and as we learnt previously when studying TRH, while a hormone may have a well-documented primary function, there may also have numerous additional effects.  The most important roles of cortisol are the activation of three metabolic pathways:-

1.    Generating glucose

2.    Anti-stress

3.    Anti-inflammation

The function that Nigella has stumbled upon is number two.  While we all need cortisol, too much is not good for you.

Cortisol is released in response to stress and while short term increases serve a valuable purpose, prolonged cortisol secretion, perhaps caused by chronic stress, can cause damaging physiological changes.

It would be nice if there was a way to reduce excess, stress-induced, cortisol and then you would feel calm, refreshed and ready to fight on.  While exercise is also very good for you, it is actually the singing that really makes Nigella feel good.

It is scientifically established that singing substantially reduces your level of cortisol, which in turn makes you feel much better.  Here is a link to simple study done in Angie’s home country and with the help of the Macquarie University Choir.

I could now tell you all about music therapy and its application in psychiatry.  If you are interested, do look into it; it is used to treat everything from autism to alcoholism.

In essence music is good for you; but it seems that making your own music is far more beneficial than just listening to other people.

Tip for parents

Follow Nigella’s example (and mine) and sing.
I will check to see if Angie does.

Back to ASD

Have you noticed that an autistic child is at their most stressed first thing in the morning?  I certainly have; this was particularly marked when Monty’s behaviour regressed.  My approach was and remains to have Monty through this possible trouble zone quickly; so once he is up, he should have breakfast, brush teeth and get dressed promptly. It proved an effective strategy.
I did wonder what the reason for this phenomenon was.  Originally, I thought it was just the fact that he had not eaten for a long time and so his blood sugar level had dropped.  This applies with all kids; if they have not eaten, they will get cranky.

Now I have an alternative explanation, and probably a better one. It is likely to do with the natural variation in cortisol levels in the blood that apparently peaks at about 8am and falls to a low for the day at bed time.  Wait to read more in Part II.

Autism, Depression and Suicidal Tendencies

It may not make cheerful reading, but one factor these three groups all have in common is dysregulation of the HPA, which is the Hypothalamic-Pituitary-Adrenal Axis.  There is also the well documented phenomenon of enhanced cortisol response to stress in children in autism. This will be continued in a science-heavy Part II and quite possibly will result in another hypothesis regarding a practical intervention.

Just to let you know, that my very long recent post about the TRH hypothesis has now gone for review to a clever and interested neuroscientist in the US.  I have a feeling that it will shortly be joined by my CRH (corticotropin releasing hormone) hypothesis; but maybe it should be called Angie’s CRH hypothesis?   

Cortisol, AVP, Oxytocin - Depression & Stress Part II

 

Help Wanted!!

G.I. Disorders, Epilepsy and M.R.

 

As was noted in the previous post, there are three large subgroups in autism; call them comorbidities if you prefer.  Taken together, these 3 subgroups must account for the majority of cases in autism.

Since Monty is not affected by any of these three conditions, I am not equipped to research them in the depth they deserve.  If you have an autistic child affected by gastrointestinal disorders, epilepsy or mental retardation, why not participate and combine your own personal experiences, with a review of the research literature;  with Google Scholar it really is not so hard.

Alternatively, anybody with a professional interest in these areas is equally welcome to join in.

 

Guest Blogger

I will post your work un-edited on this blog.  We can then all help ourselves to apply practical science to solve the puzzle that is autism; the objective being to reverse it and not just theorize about it.

 

If you are interested, just reply via the comment function.

 

 

 

Peter Polygon of Impairments in Autism - Pizza Time

Most kids love pizza; Monty is no exception and today he gets his own, by special delivery.

The first slice is that rather dull triad of impairments, which is taught to therapists learning about autism.  Autism is supposed to be the place where these three impairments overlap.  I was always rather underwhelmed by this; definitely a slice needing extra ketchup. 

So based on what I have learned myself, and read in the literature I propose a more colourful pizza, which of course gets a fancy name.

In the literature, whether or not there was a regression after birth, seems to be relevant in understanding the cause of autism, in that particular case.  It would also therefore be a factor indicating the appropriate therapy.

You may be surprised to see "depression", but it is there because there are many biological markers in autism that are also present in people with depression (and other mental health disorders).  These will be discussed in a subsequent science-heavy post.  I also note that while some autistic people look happy, at least some of the time, others look pretty miserable.  Perhaps they have depression, but nobody stopped to think about it.

Aggression is pretty self-explanatory.  Some people with autism never seem to get aggressive, but for others it can become a real issue.

Serious comorbidities, in plain English, means other serious symptoms that co-exist in that particular person's type of autism.  This again is extremely relevant in both understanding the cause of that person's autism and also the the most effective ways of treating it.  Not only do many people with autism also have epilepsy, but there is a clear overlap between what causes some types of convulsion and what provokes some autistic behaviours.  This is not fully understood in the literature.  There is already an overlap between novel therapies for epilepsy and novel therapies for autism.

MR is mental retardation; it is quite commonly associated with autism.  I suspect some unfortunate children with un-managed autism end up in such a condition where they are falsely labeled with MR.

GI disorders are gastrointestinal stomach problems such as diarrhea, constipation and reflux.  In some studies as many as 50% of autistic children have GI disorders, many being chronic.  In the literature, there is much about the connection between these disorders and autism; although to talk about it outside the literature is verging on heresy.

You will likely know that ADHD is attention deficit hyperactive disorder.  This is another diagnosis that has become extremely fashionable, particularly in the US.  I found a paper entitled "The worldwide prevalence of ADHD: is it an American condition?", the full version is free, just click it.  Anyway, lack of attention and hyperactivity are definitely symptoms of certain types of autism.  Therapy that works for ADHD should be interesting for us too. Incidentally, in my earlier posts about Autistic Sensory Overload (ASO) and the similarity with Hypokalemic Sensory Overload (hypoSO), if you read the links you would have seen that hypoSO is now being linked with ADHD, although I seem to be the only person to claim a link to ASO.

Fog and present, or not present is a phenomenon that you may know but call something else.  One reader of this blog referred to his child's zombie-like state.  Some older autistic people, who now have much reduced symptoms, refer to knowing what was going on in their youth, but as if being surrounded by fog.  People who speak better French than English, say things along the lines of "today in school, Monty was not present".  It does not quite work in English.  They mean Monty was physically in school, but his mind was somewhere else.  Fortunately, Bumetanide seems to make kids "present"; and this is a good thing.

Since all autistic kids seem to be unique, I have left the 12th triangle as a spare; for you to customize as you see fit.

Monty's own pizza is looking a bit thin and so it is time to order a Margherita for him and a Margarita for me.

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:-

Die-hard:

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.

Conceptual Map of Behavioural Homeostasis in Autism

In the research there are various scales to measure how autistic a child is, for example the Childhood Autism Rating Scale (CARS).  They are very subjective, but clearly better than nothing at all. I read a study on older children with ASD that was highlighting that as the children get older, they become less autistic.  In the CARS scale there are 14 behavioural areas to grade and then there is number 15, which is the general impression of the clinician.  In effect, number 15 is how autistic the clinicians feel the subject to be;  you would expect that number 15 would be consistant with the findings in the first 14 areas.  In the test the older children all showed a big improvement in areas 1 to 14, but not in number 15, which is the one that really matters.  This really means that either the use of CARS was inappropriate or CARS is flawed.

As children get older the concept of "normal" changes.  So there is not much point comparing a 15 year old with ASD to a normal/typical 3 year old.  So I decided that kids with ASD deserve a better framework, so that clinicians and parents have a better way to understand many important issues, ranging from prognosis, to just what is autism and where its boundaries really are.

In the Peter Autism Scale (PAS), typical kids start at birth with a score of zero. After 12 months, typical kids show rapid development; they acquire an increasingly negative PAS score. After puberty has ended, the PAS score stops declining and gradually heads back towards minus 20.  Much later in life, after starting their own family, the PAS drifts back up towards minus 10.

Autistic children are likely born with a positive PAS score; as they show either regression, or just the emergence of ASD-type behaviours, the score will increase. At a score of 60, self injurious behaviour is exhibited; at a score of 80 there is serious aggression and violence. The scale stops at 100, where the child needs physical restraint and is likely to be sent to an institution (depending on which country they live in).

There has been an explosion in the number of children diagnosed with ASD, most notably in the US.  Undoubtedly a great deal of this is explained by a bizarre, ever-widening of the definition of autism.  At one end of the scale, what were formerly nerds/geeks are now "on the spectrum" and at the other end of the scale, cases of mental retardation (MR) are now labeled as severe autism.  This ever changing, ever stretching, diagnosis is extremely harmful to the search for genuine therapies.

Mild social difficulties and obsession with computers or music is nothing new; it may indeed be worthy of a diagnostic term, but I do not think it is autism, or ASD.  On the PAS framework, you will note a blue cloud.

Asperger's syndrome already has a nice name; in the PAS conceptual map it follows in parallel the general path of typical development but has a score 12 higher.  It passes through the lower edge of the blue cloud.

Now to the serious case of what I shall term "disabling autism".  These are children with a PAS score of greater than 20.  These children need immediate therapy and their parents need external training and support.  If this help is received, there is good chance that the PAS score will never reach 60, let alone 80.  If help is not received and the PAS reaches 100, there will not be a happy ending.

In a perfect world, the prompt intervention (both behavioural and pharmacological) will give the child a fighting chance of gradually heading south to that big blue cloud.

Monty no BU no NAC

This is my estimation of Monty's development with no drugs

 

Monty + NAC

This is my estimated outcome using NAC alone

 

Monty + BU + NAC

This is my curreent prognosis using Bumetanide and NAC

 

Monty + BU + NAC + Agent X

This is my optimal prognosis achieved by adding the unkown Agent X

Monty himself is the first subject to have a PAS assessment.  Clearly this is just conceptual and so is purely illustrative;  nonetheless I think it has value.

Monty was not born a typical baby; he was always a bit different.  These differences grew and it was in his fourth year that he really began to acquire and demonstrate lots of new skills.  Then, with a great deal of behavioral support, it was plain sailing until he was about 8 and a half years old, when almost overnight, his world fell apart.  His longtime assistant had to leave him and his cosy world was overturned.  All the behaviours that he had avoided earlier, such as head banging and aggression to others, emerged with a vengeance.  Nine months later things had finally returned to "normal", but at a higher plateau of autism than 12 months before.

Three months later I trialed Bumetanide (BU in the chart) and three months after that plateau I trialed NAC.  In the PAS framework, Bumetanide appeared to provide a one-off 40% reduction.  Then with NAC, I took a wild guess at a 25% one-off reduction in PAS score.

Now we are in sight of the blue cloud, but a lot of work remains to be done.

Within 12 months, I would like to have found Agent X, which would give another 25% reduction in PAS score.  I think that will be as much help as can be reasonably expected from drugs.     

If it was not for puberty, it would be plain sailing into the future.  In the prediction, I have forecast another behavioral meltdown (loss of behavioural homeostatis), but since we now have experience of such a shock, I hope to manage it better.




















  

Placebo Effect in Autism

 

Placebo effect in autism - Parent/Child Matrix      

A big problem in autism research is the placebo effect.  It could be because the child found the therapy fun and liked all the attention and so showed improved behaviors; or it could be that the parents so desperately wanted to see an improvement, that they imagined it.

In good research, half of the kids receives the trial drug and the other half receive a placebo.  But what happens when both groups show an improvement?  Well if both groups show equal improvement then the therapy has no value.  In almost all the research I have seen, the placebo group shows an improvement.  In one study the placebo group improved 70% on the behaviour rating scale.

We need to conclude several things:-

• Good studies rely on assessment by clinicians, not parents
• If the therapy was fun and included lots of 1:1 attention, then the kid's behavior will improve, regardless of the medical value of the therapy.
• Do not reject a study because the placebo group improve moderately
• Always focus on the relative improvement of the group on the trial therapy vs the control group on the placebo.

Behavioural rating scales

In autism there are many different behavioural rating scales, including :-

• CGI (clinical global impression) Physician and Parental version 
• ABC (abherrant behaviours checklist)
• CARS (Childhood Autism Rating Scale)
• ADOS (Autism Diagnostic Observation Schedule)

Researchers can pick and choose which scale to use and which scale to emphasize.  All these scales are highly subjective.  Different people assessing the same child will get a slightly different answer.  The same person assessing the same child a week later will also get a slightly different answer. 

Tiny Studies and Not so Objective Researchers

Many studies in autism have a tiny number of subjects, sometimes fewer than ten. Often researchers have a vested interest in the research, this is not always a bad thing. As a result it is best to focus on research that has been frequently cited by other researchers, this should mean that they buy into it.

Example - Secretin Research

In a 2003 study of the hormone secretin, 62 children participated. At that time there were stories that secretin was a "wonder cure" for autism. Half received a one-off injection of secretin, the other half received a placebo. The clinicians' tests showed that there was no behavioral improvement in either group; the parents however saw things differently. The parents of 48 children saw an improvement. When asked to guess whether their child had received the placebo or the secretin, 27 guessed correctly and 27 guessed wrong. Six families would not guess and two families dropped out.


 

LEGO Therapy

You may not have heard of LEGO therapy; not only does it exist, but it has been proved to be effective in several studies, including at the University of Cambridge, Autism Research Centre (home of Borat's brother, Simon). 

While they were playing with LEGO, two very bright researchers over in the New York State Institute for Basic Research in Development Disabilities were busy writing and editing an amazing 458 page book of scientific research called  AUTISM: Oxidative Stress, Inflammation and Immune Abnormalities.  I say amazing, because it has in one place, what would take me a month to find in tiny pieces all over the internet.  There were 54 contributors including from big names like Harvard, Columbia and Johns Hopkins.

The good news is that an American charity (www.NotAutism.org) has been sending out complementary copies of the book to various leading Medical Schools.  This is funny because Nela, Monty's assistant at school, suggested the same thing, that we should send it to everyone.  Hopefully the Autism Research Centre of Cambridge University has already bought a copy, but don't be surprised if they have not.


Back to LEGO Therapy

The therapy was developed by Daniel Legoff; and yes, it appears that is his real name.  Just for a change, I decided to include a short film that explains all about the therapy. Just click on the arrow, it takes 15 seconds to get to the actual film.  (if you have an iPad or Apple click here instead)