Saturday, 1 February 2014

Updated Conceptual Map of Behavioural Homeostasis in Autism

Ten months ago I decided to invent my own, admittedly subjective, autism scale to map the progress of Monty, aged 10 with ASD; a lot has changed since then, so I decided to update it.
For background to the scale, read the earlier post.



The chart above is an update of the original; I added the bright yellow line to reflect events since April 2013 and a future prediction.  I decided that predicting more than three years is pointless.

The orange line shows that autism was very present from birth, with a second wave hitting causing more symptoms and then a nice shallow decline.  Aged 8 and half, emotional stress causes a huge regression and he enters into the world of SIB and aggression.  The situation is gradually recovered using exclusively an ABA approach.  The new homeostasis is at a higher plateau.  I expect some epigenetic change occurred.
At 17 December 2013, we switch to the red line; this is the point when he started taking Bumetanide (BU), courtesy of Ben-Ari and Lemmonier, and then we see a sharp step change in improvement.  This was followed shortly thereafter by another step down, following the start of NAC.  This takes us to April 2013.  Now we switch to the yellow line.
In April 2013, 10 months ago, I started to look for further help in the form of "agent X".  I gave myself a year to find it, but it came much faster; statin therapy had arrived.
Come summer, everything goes sharply into reverse, with a big spike in the yellow line back up into the danger zone.  The spike seems to have been caused by over-activation of the immune system caused by pollen, of all things.  Using mast cell stabilizers the situation was fully recovered.  There was no net loss (no epigenetic damage).

Then in January, the experimental Polypill takes shape and we see another sharp drop in the autism rating on the yellow line.
Now we are on the verge of “nerd cloud”, which separates kids with serious autism from the regular kids below it.  The top end of the cloud might be called high functioning autism and the lower part Asperger’s.  When I was a child this cloud existed, but people were just called odd or weird; in the US they were already called nerds.  In 1950 the word nerd was created by Dr Seuss, in his book, If I Ran the Zoo.
It is of course a pejorative term, but nowadays there are some very successful and wealthy nerds, so maybe it should not be.

Time will tell whether we can continue to descend through the nerd cloud.  What is going to happen in a few months when the pollen returns?  Will the Polypill be mightier than the re-activated immune system?  Perhaps mast cell stabilizers should be in the Polypill?
It is clear that more work is going to be needed and, perhaps, in addition to an Autism Polypill, there is a need for an Autism Toolkit.  The Toolkit is what you need when the Polypill stops working, and perhaps, before it can start working in some people.


1 comment:

  1. Now that is the first sensible long term assessment and follow up tool I've seen so far.
    And I will be borrowing your technique :)


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