Showing posts with label Autism framework. Show all posts
Showing posts with label Autism framework. Show all posts

Saturday 5 April 2014

True Self

I could have given this post and the above graphic a fancy name like "Psycho-neurobiological model of autism", but True Self seems more appropriate.

If you have ever read a book on autism by a psychologist, it is worlds away from the books by the scientific boffins.  In reality, the psychologists have a simpler job, since they do not have to prove their theories with biological data.

One interesting observation from psychology is the concept that the human body has two parallel control mechanisms, the nervous system and the hormone system.  The nervous system mediates immediate changes, while the hormonal system sets the background changes.

When it comes to fear and stress, there are measurable hormonal changes.  Using willpower or even singing, you can make your self feel better and make a measurable change in the hormone levels.  We saw this earlier with the example of singing lowering the stress hormone cortisol, as measured in saliva.

This NIKE (Just do it!) effect means that you can directly influence your own hormones.  By inference, if you have a hormone imbalance, as seems to be the case on some types of autism, you have some powers to modulate it yourself.  You could think of it as willpower, or mind over matter. 

I suggest that even instincts may fall into this category.  Just as soldiers are taught to react instinctively, without pausing for thought, it should be possible to teach young children to develop their instincts.  The apparent lack of gross motor skills in kids with ASD can often be overcome with practice and repetition (the foundations of ABA);  in effect you are teaching the child what is instinctive in other kids.  If you through a ball at a younger kid with autism, he does not react and will let it hit him.  He does not know what to do and he lacks the instinct to either get out of the way, or to catch it.

As part of a good ABA programme a lot of time is spent practicing both gross motor skills (ball play, jumping, dancing etc) and fine motor skills.  Then you have these skills, without the need to consciously think about them.

People do ask why ABA seems to work so well for some children, is it the child? is it the therapist? it is just the sheer amount of it that matters?  They tend not to wonder what the ABA is actually doing inside the child's head.

It is relevant to this blog, which is all about the biology of the brain.  We have a pretty good idea of some of things that are dysfunctional in autism and how some emerging drug interventions work.  But at the same time, there is this behavioral intervention that seems able to overcome some of these biological deficits.

The NIKE effect (Just do it) and the AVIS effect (We try harder) are extremely potent.  In reality, they are very much part of the body's nervous control system.  In some cases this training is so powerful that instead of being derailed by interference from ion channels and oxidative stress, all that matters is completing the task.

Some typical people's headaches are also caused by ion channel dysfunction; when it happens they might call in sick.  Another type of person is more driven, the fact they have some other obligations is more important than their headache, so they just press on.

The Faucet/Tap/Valve

A conventional faucet/tap might look like this old one on the left.

A so-called "in line valve" has a pipe on both ends and as you turn it, you gradually reduce the flow to zero

If you make a technical drawing involving a valve, there are various special symbols, but they generally look like this.  Sometimes if the valve is closed it would be solid black.

Why does drug intention in autism sometimes stop working ?

We have seen in this blog that several apparently different, but interconnected, conditions seem to mediate autism, at least in some people:-
  • Oxidative stress
  • Neuroinflammation
  • Channelopathies
  • Hormonal dysfunction
  • Immune system "over-activation"

So if you now look again at the True Self graphic

Oxidative stress, if present, will manifest itself as stereotypy and in the graphic it will close the valve a little blocking the true self.  In hard science, the oxidative stress will also reduce the level of the thyroid hormone T3 in the brain.  We saw this in research from Harvard that showed that the oxidative stress reduces the level of the enzyme D2 that converts the pro-hormone T4 into T3.  So both the blue valve and the green valve close.

In similar fashion both neuro-inflammation and channelopathies affect both the nervous system and the hormonal system. 

This might explain the fact that sleeping patterns, appetite, emotions, empathy, self-confidence are all sometimes impaired in autism.  To some extent, these impairments seem to be reversible.

In the only real case of autism that I have to contend with, the most important factor seems to be, the sometimes over-activated, immune system.  I am presuming it is just affecting the nervous system.  In this case, the blue valve to the left can shut completely; the Observable Self is then a totally different person to the True Self.  It also means that even though the other valves upstream may be wide open, it is all to no avail.

So when my autism drugs "stopped working" it was because further down stream there was an insurmountable problem.  Even NIKE and Avis had little effect.   

In the children for whom none of these drugs show any effect, I suspect either the immune system is involved, or in their type of autism, there are other additional factors at play.

A Note on ABA

ABA (Applied Behavioral Analysis) is not the subject of this blog, but it would be more than worthy.  When well implemented, ABA is a powerful resource and not only for small children.  The general public perception of ABA rather misses the point, it is actually more a philosophy applicable life-long.

We once had an excellent young ABA consultant trained at the New England Centre for Children, in Massachusetts.  I was surprised to hear from her about the support still being given to older adults; the adult and their buddy (ABA assistant) would even go on short trips, like to Las Vegas.

We are now using ABA to develop conversational skills.  An example is giving Monty, aged 10 with ASD, the task in break time at school, to go and initiate five conversations with the potential reward of his favourite candy.  This might sound very staged, but he goes around the school looking for kids to talk to, some of whom he has never spoken to before, initiates the conversation, looks over his shoulder to check his assistant has noticed, plays a bit and then finds someone else to talk to.  He did not take the easy option and just find the nearest five kids and say "Hi, how are you".  I was surprised how well this worked.

Later you can fade the reinforcer, so that he works for praise and not candy.  You can also gradually increase the target of five conversations.  You can then also extend the requirement to have more stages to and fro, in the conversation.  It may sound very odd to do this, but the end result will be learning to make social conversation, which would be natural in other kids.  

What people do not realize is just how much ABA is needed and that it is not just like having a music lesson, it is more like a religion.  If everyone who interacts with the child consistently applies the principles, much can be achieved.  If ABA is just a lesson the child goes to and then comes home, it is not a surprise that very much less is achieved.

If you talk to the parent of a child who has persevered with ABA for years, you will see just how committed they became.  If you prefer sport as an analogy, it is just like a would-be professional tennis player, who practices every day from the early hours.  It is an obsession, but if you want to compete at a high level, you just have to do it.

Where we live there is no ABA school, but there is a Novak Djokovic tennis academy, in fact they came to visit Monty's school last week.  I think Novak would definitely understand the NIKE and Avis effects, he probably would not think ABA was odd at all.


Sunday 22 December 2013

Autism Pathology as a Venn Diagram

Source: Peter Research                     

Oxidative stress increases neuro-inflammation
Neuro-inflammation increases oxidative stress
Both oxidative stress and neuro-inflammation contribute to central hormonal dysfunction,
e.g. stress reducing D2 levels that stop T4 converting to T3 in the brain

One year after starting my investigation, I thought it would be useful to sum up Classic
Autism in a simple form.  I chose a Venn diagram.  At school your kids probably have just 
two overlapping circles.  If you have four variables you need to use ellipses.  Where all four variables are in play, is the area where all four ellipses overlap.  This is untreated classic autism.
Once you successfully treat any of the four trouble areas (Neuro-inflammation, oxidative
stress, channelopathies and hormonal dysfunction in the brain) you can modify the disease
and move to a happier part of the diagram. 

Thursday 11 April 2013

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.

Sunday 7 April 2013

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.


Sunday 31 March 2013

Autism Framework of Restricted Vision

Today's post is about a new framework to help us all understand what is going on in the world of autism.  If you read a lot, you will have heard of Mindblindness and Mindreading.  It is an interesting idea developed by Borat's big brother, Simon Baron-Cohen.

You may recall that Monty's afternoon therapist and pal is called Dule ("Doolay"); well Dule and I agreed a long time ago that at least half of the problem lies not in the mind of the autistic child, but rather in the mind of the "normal" adults. Simon's brother Sacha (Borat) would probably find this amusing, but it is actually true.

The Autism Framework of Restricted Vision shows how the adults cannot  see over the long red secret wall.  All they can see is their family doctor, and if they live in the US, their DAN doctor; not to mention quackery found on the internet.

Here is what the other characters can see:-

  1. Family doctor can see the NICE guidelines
  2. DAN Doctor can see the quackery and if he/she chooses also the fundamental scientific research.  There is a lot of money to be made in various "laboratory" tests, supplements and potions.
  3. Neurodevelopment paediatricians are basically good.  They see everything, they note that the wizz kid researchers rush off to patent their ideas and set up a "Micro Pharma" company to exploit them.  They will wait until everything is FDA approved, before they try anything new.  Nobody wants to be on the wrong end of a lawsuit, do they?
  4. Micro Pharma are the start-ups, created by the wizz kid researchers. I wish them the very best of luck, Mr Lemmonier and Mr Hardan in particular.
  5. Big Pharma is showing some interest in autism and they have some drugs being trialed, but I would put my money on Micro Pharma. 
  6. NICE we covered in an earlier post. National Institute for Health and Care Excellence will tell you in 780 pages what the Neurodevelopment Paediatrician will tell you in a short email.
  7. Quackery is the lucrative field of exploiting the plight of desperate parents, it seems to be mainly a US-based activity.  There are elements of quackery that are actually interesting; the reason being that there are only so many elements in the human brain.  If you mess around with enough of them, you may in the end hit on something that does actually work.

My approach is to take off the blinkers, climb over the secret wall and go direct to the data, that is to say, the fundamental scientific research.  There is plenty of it.

Coming next is a series on biological markers in autism.  These markers should lead us to our final destination.