Some risks are worth taking, however long the journey
Academic results are part of most people’s life, whether you love them or loathe them.
Most children diagnosed today with
autism will do just fine at school, but this was not always the case. Those born 20 or 30 years ago and diagnosed
in early childhood with autism are usually in a much less fortunate position.
Today’s post is about level 3 autism
and what the Lancet Commission
want to call Profound autism. The new idea is that if by age of 8, a child with
autism still has severe intellectual disability or minimal language then he/she
can be best described as having Profound Autism.
In
other literature the term SDA (Strictly Defined Autism) was proposed. It means what was called autism back in
the 1990s and earlier.
You can
have severe autism with any level of IQ, which I think many people may not be
aware of, or even accept.
Monty and his Academic
Results
The
“bravo” for Monty comes from Dr Ben-Ari, the scientific brain behind the idea
to use Bumetanide to treat autism.
I wrote
to tell him that after almost a decade of bumetanide, Monty has passed his
externally graded high school exams. In
the English system they are called General Certificates of Secondary Education
(GCSE), Monty took the international version called IGCSE. You normally take
them at the age of 16, but we held Monty back 2 years at the age of 9 so he took them at 18 years old.
These
exams are not graded by the school, they are sent away to be marked by someone
who just sees your candidate number. Of
course it is still possible to fiddle the results, but this is not common.
Up to
the age of 9, it was pretty clear that Monty would not even be attempting these
exams. It was assumed he would not be
going to the high school. His school has
no resources for those with special needs.
Fast forward a decade and Monty made his way into high school and in 2022 sat his IGCSE exams. His results included a B in science, a C in maths a C in English. As I told Dr Ben Ari, Monty’s results will not take him to the Ivy League or a Grande École, over where he is in France. For someone with Strictly Defined Autism (SDA) it is pretty remarkable.
In the US you might well "graduate" high school, but the quotation marks hide the real picture. Graduation from special education just means you aged out of it. Life is better without the quotation marks.
Bumetanide
may have failed its phase 3 clinical trial, but for some people with severe
autism it is a game changer.
Game Changer
My new book
is also called Game Changer and it is currently being edited.
It will
be available via Amazon as either an eBook or as a paperback.
The
book is the length of a novel, about 90,000 words or 300 pages. It is not intended for everyone to read from
cover to cover. It has plenty of
non-scientific content and there is plenty in it a typical parent would find
useful.
Facebook links
Facebook
links to EpiphanyASD are no longer blocked.
Just use
epiphanyasd.com, not the old epiphanyasd.blogspot.com.
Trouble leaving comments
Some
people are having trouble leaving comments on the blog. This seems to be caused by 3rd
party cookies in your browser. One
solution reported to me is to switch to incognito mode.
I could
never use an iPad to do anything clever on the blog, just read it.
I have given my son 1mg of Bumetanide 1 a day for 2 months. Don’t see any eresults he is 20 now and 65kg. Thank you
ReplyDeleteI use 2mg in my son of similar size. I suggest you try the higher dose and if that does not help you can assume he is not a responder.
DeleteSome people respond and some do not. The Chinese have found biomarkers for the responders which I wrote about.
An active inflammatory condition will mask the effect of bumetanide, so for some people that is the problem.
Congrats to Monty. A well deserved achievement. Bravo!
ReplyDeleteThank you
DeleteCongratulations to Monty!
ReplyDeleteDo you have a release date yet for the book? I would love to buy a copy as soon as it is released.
And congrats again to Monty. Wishing him continued success in the future!
I think everything should be ready within a couple of months, but I have not done this before. Next step is the book cover.
DeleteThis is great news! Congratulations to Monty, I'm looking forward to reading your book.
ReplyDeleteWell done Monty! This is excellent and gives us all hope
ReplyDeleteCongratulations to your whole family, which shouldered this and made the best of it, not just for yourself. Can’t wait for your book to come out and change the game, like you already have for so many.
ReplyDeleteCongrats Monty.So happy to see your progress.
ReplyDeleteFantastic achievement, given the odds he had to overcome. Bravo, indeed, to Monty and you, both.
ReplyDeleteAnvesh
Heartfelt congratulations to Monty! What an impressive young man he has become! Does he have an interest in taking college level courses next year? Maybe university in the future?
ReplyDeleteAnd congratulations to you on the book, Peter. I will definitely get a copy as soon as it comes out.
All the best,
Mkate
Mkate, the next step is what Monty calls "things I want to learn". This is all the things he has skipped over developmentally. These are things like traveling on public transport by himself, shopping by himself, what to do if you get lost etc.
DeleteThese are of course much more important than academics.
Cooking by himself is going well, but there is helping food preparation and doing the entire job, which is different. He is currently a sous-chef for the complex food and independent for something like bacon and scrambled eggs on toast.
In some countries there are college courses for people of Monty's ability, but not where we live.
Congratulations !! Huge effort by Monty and family !!
ReplyDeleteSB
Congratulations to Monty! I can't wait for your new book Peter!
ReplyDeleteGreat achievement to be proud of and huge inspiration for the community here. Congratulations and thanks for sharing.
ReplyDeleteI pride myself by knowing the story of Monty and you. Your insights in autism and sharing of your experience deserve an “A”. The autism and NT world need to hear your perspectives - i strongly hope that you can do a TED talk.
ReplyDeletehiya, we are in the second week of bumetanide and till now we have observed that RT's sleep has improved tremendously, he sleep through the night and the prior "anxiety attacks" ( which started after ther leucovorin) at bedtime stopped the day we started the bumetanide and potassium. I've read that leucovorin could increase agitation , which the bumetanide has somewhat calmed down, do you think we should stop the leucovorin to see I the effects of bumetanide are increased ? thanks Anji
ReplyDeleteAnji, did you see a benefit from Leucovorin?
DeleteI would only use it if there is a benefit, which often relates to more speech.
If both drugs give a benefit and without troubling side effects, you would use both.
hi , we did see some improvement in eye contact and just being more present with the leucovorin ( we've just finished 6 weeks of leucoverin) , initially there was more babbling too, my parents commented on how much he was more " involved and happier) but the leucovorin also brought "agitation" kinda like night terrors before bedtime. This immediately stopped the night day we started bumetanide and potassium. Its only been 2 weeks since we started bumetanide, but the immediate effect on the agitation makes me wonder. thanks. on a separate Ive been suffering from terrible hairloss for about a year, I started taking NAC too, and was surprised that my hair stopped.
ReplyDeleteAnji, NAC seems to benefit many people with all kinds of issues. There are clinical studies showing the effect on hair loss.
DeleteI just received an email from a parent whose adult son with autism has shown great results from NAC. "He is the happiest he has ever been."
Good luck.