There are so many possible autism interventions discussed in this blog, it clearly is not always easy to know their relative merit.
There are so many people now diagnosed
with autism it is no longer such a meaningful term. The most extreme autism I think I will have
to start calling really severe autism. A
scale of 1 to 100 would be much more helpful than the current levels 1, 2 or 3.
I suppose Elon Musk and Greta are level 1.
One reader did recent describe the
effects of bumetanide in his child as being game changing. I think it is an excellent description to
use. For our reader Roger, Leucovorin
was a game changer.
Another reader wrote to me to give an
update about his three year old
“After 3 months of bumetanide treatment I've seen
improvement on his cognition, like, he is now able to finish an apple and take
the end to the trash by himself or enter in his room, turn the lights on, take
some toy, turn lights off and close the door or eat his lunch by himself. He is
smarter now.”
This reader is well on his way to finding the additional
elements for his son’s personalized polytherapy and the way he is going about it is likely
to yield optimal results. Most of what you need is tucked away in this blog somewhere. It is a case of who dares wins.
Using my scale of 1 to 100, with Elon
and Greta in low single digits and many people referred to at the blog of the US National Council of Severe Autism mainly at 80-100, we can put interventions
into a bit more perspective.
It is still far from perfect because
most people with really severe autism reach a plateau in development at a very
young age. This matters because as a
three year old they do not look/behave so differently to a typical child, but
by the time they reach 18 years old, the difference is gigantic.
If you could delay the onset of this
developmental plateau for a decade the result would be transformative. Based on the longitudinal studies to
adulthood, it looks like about 80% of severe autism reaches a plateau at the
level of a 2-3 year old. The other 20%
continue to learn, but at a slower rate than typical children.
In the case of the autism which is
<10, like Greta and Elon, very small issues can still become very
troubling. There was inevitably bullying
at school from mild to severe, there likely was (and still is) anxiety, perhaps
an eating disorder, perhaps some self harming or even suicidal thoughts.
If you fine tune the brain a little to
reduce anxiety and improve social/emotional responsiveness, you can trim
someone’s score from a 15 to a 9 and make them feel much better. Job done.
For someone with an IQ of 50 (i.e.
severe intellectual disability), non-verbal, non-literate, who is sometimes
aggressive and exhibits autistic behaviors, you are going to need much more
than fine tuning, you need a game changer.
Then you can go on and fine tune things to give further incremental
improvement.
One doctor reader did suggest to me
that, in effect, five moderately effective interventions might equal one game
changer.
In the case of autism that I deal
with, the most important step was raising cognitive function, not treating what
people consider to be autism. I think
that this applies to almost all people with a score 50 to 100. Even if it was never actually diagnosed, the
barrier to progress is low cognitive function and a severely reduced ability to
learn and acquire new skills. This has
to be fixed and for many people the tools already exist.
Improving cognitive function
Game Changer
· Bumetanide
(also Azosemide, KBr and, possibly, Betaine with the same effect of
lowering chloride inside neurons)
Fine tuning
· Atorvastatin, reducing cognitive inhibition
· Micro-dose Clonazepam, shift E/I imbalance
· Low-dose Roflumilast, raising IQ
Reducing autistic behaviors
Fine tuning
· NAC
· Sulforaphane
· Verapamil
· Oxytocin
· BHB
· Pentoxifylline
· Agmatine
· Clemastine
· DMF
· Leucovorin (Calcium Folinate)
Interventions with a slow course of action
Some interventions, for example
pro-myelinating therapies (like clemastine and Tyler’s N-acetylglucosamine), or pro-autophagy therapies, may
take a long time to show effect. I think you may need to first see very
tangible results from other therapies, which are much easier to assess.
As Roger will want to point out, in
the case of Cerebral Folate Deficiency Leucovorin was the game changer.
In the case of other metabolic
autisms, a single therapy may also be the game changer, like the Greek boy for
whom high dose biotin resolved his previously severe autism.
In the case of Fragile-X, there seem
to be potential game changers galore.
The latest is plugging the leaky membrane in mitochondria that is
allowing ATP to leak out, using a research drug dexpramipexole,
or potentially the related and already approved variant Mirapex ER (pramipexole).
Mirapex is used to treat the symptoms
of Parkinson Disease and Restless
Legs Syndrome.
Hopefully, Dr Naviaux's Suramin will be a game changer for some. More of that in the coming post on leaky ATP.
Conclusion
I am told where we live that Monty’s
autism is “fixed”, or by one autism Grandad we know, “he’s 80% fixed”.
If you started life with (really) severe
autism, even 80% fixed means you are still pretty autistic, much more so than
Elon and Greta, but far less so than the now adult “children” over at the
National Council for Severe Autism, who have really severe autism and often had
a very early plateau in development.
Monty has finished his year-end exams. Overall, the grades of his NT classmates are pretty terrible, maybe due to Covid disruptions. I told Monty’s assistant that if he can come somewhere in the middle, without her doing the tests for him or having extra time, that is a great result, regardless of the grade itself. In all his subjects he comes in the middle. In the English educational system, Monty is now a C student, maybe even with the odd B or D; so not something to boast about. What really is amazing is this person could not figure out 9 – 2 = 7, at the age of 9 years old, prior to starting bumetanide and his Polypill therapy. Now he is nearly 18 years old.
If you find that your young child is a
genuine bumetanide responder, but later struggle to source it, take a close
look at what untreated severe autism looks like by adulthood. Then you may choose to redouble your efforts
to get hold of your game changer. Some readers are getting it from Egypt,
Pakistan, Nigeria, China, Austria and many from Mexico and Spain. In Brazil you can buy it only in a
compounding pharmacy. The lucky ones get it at their local pharmacy, which is
what should be possible for everyone and one day that might even happen.
There are countless fine-tuning
therapies that may be potentially effective in a particular person. They are certainly worth having; you just
have to look at what is available and cost effective.
There will soon be a post about leaky
ATP in Fragile X and autism.
Two readers have highlighted the
research suggesting that Betaine might have a similar effect to
Bumetanide. It does not block the NKCC1
transporter, but it may reduce the mRNA that produces them, so the net effect
may potentially be similar. At much
lower doses, Betaine is a common autism supplement. This will be covered in the next post.
