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