See you in Hell then.

Does religion have something to do with treating autism?  It should not have, but actually it does.

 

Depending on where you live in the world, you may come across a lot of religious intolerance.  In Iraq, Muslim Sunnis don’t seem to care for Muslim Shias, in the Indian subcontinent Hindus for Muslims, in Northern Ireland some Protestants for Catholics, the list goes on.  To an outsider, the differences between the competing teachings may seem marginal, but to an insider it can even be a reason to go to war.  It has often been the case that some of those going to these extremes, do not even really understand the competing teachings of their own religion.

 

What you might ask does this have to do with Autism and the subject of my blog?

 

If you have a child with autism, or you work full-time as a carer or therapist, you will likely have experienced emotional stresses that would destabilize all but the calmest of souls.  If you are new to the subject of autism you will probably skip over this part, if not, it will surely resonate deeply.

 

As will become apparent in forthcoming posts, this syndrome is very relevant when sifting through the research papers.  Acronyms are very popular in the literature of Applied Behavioural Analysis, neuroscience and psychiatry. Being a mixture of engineer/strategy consultant/PR consultant and aspiring entrepreneur I often struggle with spelling, let alone remembering what all the acronyms mean.  In this case, I will make an exception.  I will term it Autistic Stress Syndrome (ASS) and define it as when a sufferer loses all, or part of, their rational objectivity and becomes obsessive, close minded and  perhaps judgemental themselves.  A professional suffering from the syndrome will be lovingly termed “a smart ass”.  There are of course very many well intentioned smart asses and indeed some of the most useful people you can know will be smart asses.

 

This blog is all about science.  To be a good scientist you have to rational and objective.  To be a great scientist you also need to challenge accepted wisdom, realize that you do not (yet) know everything and sometimes you might just have got it wrong.

 

In the field of managing/teaching children with autism there are several schools of thought, some of which overlap.  Here is a short list:-

 

1.    Applied Behavioural Analysis (ABA) / Lovaas / Verbal Behaviour (VB)

2.    Floor time / Greenspan

3.    Hannen

4.    Occupational Therapy (OT)

5.    Picture Exchange Communication System (PECS)

6.    Speech  & language Therapy (SLT)

7.    Structure, Positive, Empathy, Low arousal, Links (SPELL)

8.    TEACCH

 

It is striking is that in many cases a professional specialized in one of these areas will not even want to discuss there being any merit whatsoever in the others.  As with religion, if you advocate a mix and match approach, rather than accept a one size fits all approach you will be consigned to purgatory or even hell.

 

When it comes to the field of Complementary and Alternative Medicine (CAM) the religious fervour grows even stronger and science goes completely out of the window.

 

 From my own biased experience of behavioural intereventions, here is what matters:-

 

·         Earliest possible start of intervention

·         Consistency 24/7 among care givers / therapists

·        Superhuman effort to provide near constant, stimulating, one-to-one contact during waking   hours for as a many years as it takes

 

I looked into all methods and found that the choice of ABA/ VB was a no brainer.  VB is just an approach within ABA that prioritizes speech.  PECS is a communication system for non-verbal kids, that is based on the principals of ABA.   Before the child is verbal, Hannen and Floor time are very useful approaches to encourage interaction. SPELL and TEACCH have lots of good methods highlighting the need to have structure, employ visual cues etc.  If the speech therapist (SLT) can teach you and your non-verbal child PECS that would be great.  Motor skills and play skills are a key part of an ABA/VB programme; they are also part of Occupational Therapy.  The OT therapist is probably using ABA without even knowing it.

 

 

 

 

Bumetanide - how a water pill can reduce autistic behaviours

Bumetanide is a loop diuretic that has been used for adults since 1976 and in children since 1986.  It has recently been successfully used to halt seizures in extremely young babies.  The use of Bumetanide for the control of such seizures was proposed in 2005 along with the suggested mechanism. 

 

A summary of that mechanism is that elevated intracellular levels of Cl^-  cause GABA to excite rather than inhibit inside the hippocampus.  But in the spinal cord GABA is already known to be inhibitory.  As a result non-convulsive seizures can occur in very young babies.  Because the GABA in spine is inhibitory there are no violent signs of convulsion, but in the hippocampus there is a seizure going on.

Bumetanide reduces intracellular levels of Cl^- , it inhibits the NKCC1 transporter so renders GABA inhibitory in the hippocampus . This action alone has been shown to make the loop diuretic a much more effective anticonvulsant than phenobarbital, which can actually exacerbate the seizure.

Research shows that during a brief period from just before to just after birth, maternal oxytocin (see note * below) temporarily renders GABA inhibitory, possibly by reducing NKCC1 activity.  

Thereafter, GABA remains excitatory until GABA itself causes a switch from excitation to inhibition of GABA by inducing expression of the mature chloride transporter, KCC2.  KCC2 transports chloride out of the cell, thereby reversing the concentration gradient of chloride.

Most anesthetic and indeed anticonvulsants are GABAergic.  It was found that giving such an anesthetic to a very young rat actually stimulated it, since GABA was still excitatory in the hippocampus.  For the same reason giving the GABAergic anticonvulsant  phenobarbital to a young baby only makes its seizure worse.

Valium is also GABAergic and so when its use in autitstic children demonstrates a stimulating rather than a calming role the question then arose as to the possibility of that elevated intracellular levels of Cl^- are causing GABA to remain excitatory rather than inhibitory in the autistic brain.

The logical question was than would reducing the level of Cl^- trip GABA back to being inhibitory and then this would manifest itself in measurable behavioural changes.

This hypothesis was first tested in a small trial in 2010 and then in full randomized controlled trial in 2012.


Merci beaucoup M.Lemonnier pour votre contribution à la science de l'autisme !
 

Note

*Oxytoxin may sound familiar. It is in Phase II clinical trials as a treatment for autism.

Coincidence ??




 

Epiphany - Applied Neurological Analysis

For 5 years I have been learning and applying ABA (Applied Behavioural Analysis) to treat autism. This is a very time consuming, although highly fruitful process. Continued gradual improvement has been the result.

Then in December 2012 came my epiphany.

I read a very interesting clinical trial - A randomised controlled trial of bumetanide in the treatment of autism inchildren. This turned out to be a transformative moment for my son.

I thoroughly checked the possible side effects, acquired bumetanide, and made my own trial not telling anybody. Almost immediately the positive effects began to show and I kept getting unprompted feedback from school, relatives and even the special piano teacher. "What has happened to Monty ?" they were all asking and then they started telling me all the great things he was doing.

Then I looked into the history of the controlled trial. It all started when Lemmonier asked a colleague why is was that Valium works in reverse in kids with autism. This really shocked me. Is it really true that there are well established blatant biological abnormalities in autism ?  If so, maybe there are more ?

I started looking in the research and there are lots of such abnormalities, several waiting to be thoroughly investigated.

So I termed my new project ANA (Applied Neurological Analysis). I am going through 40 years of research (via Google Scholar) looking for anything that looks odd to me, albeit not a neurobiologist.

I already came up with some great stuff. I am looking for things that have either been proved in a randomised controlled clinical trial, or where just the trial needs to be done.

There is a remarkable amount of relevant research already out there, particularly if you include associated disorders such as epilepsy.