My autism book has been published.
Reviews
Audrey Davidow, Pitt Hopkins Research Foundation:-
Too much promising science in the Autism field simply languishes in the lab, never making its way to clinical trials. Luckily for all of us special needs parents, Peter Lloyd-Thomas has done the translation for us, running his own n-of-1 trials on his son to share with the rest of us his vast knowledge on the subject - knowledge that goes beyond that of any doctor I've ever encountered in my 11 years on this journey. This book is a manual every doctor, scientist and parent should read, offering many promising interventions rooted in science. But at its core, it is a book of hope – a book that reminds us to never give up on our children who are so desperate to learn, grow, communicate and develop meaningful relationships, just like the rest of us. Peter understands what many doctors don't seem to grasp; there are tangible ways to help our children, right now. Not in 10 years. Not once years’ worth of clinical trials are complete. NOW. And his book is the ultimate bible for just how to do it.
Agnieszka WroczyĆska, a doctor and a mother of a child with autism and significant comorbidities, requiring substantial support :-
While there may be many different views on the essence autism spectrum disorder it is undeniable that ASD is associated with high unmet medical needs and lack of adequate translation of research findings into clinical practice. This book is a very good starting point to understand how you can use available scientific evidence to improve your child's quality of life. The book does not give all the answers, but it will help you ask the right questions.
How to use this book and what it offers
(this is based on feedback from those who read the draft
version of the book)
· This book is
written for those people who want to treat any debilitating symptoms of autism
and common comorbidities, including intellectual disability.
· The book is much
less complicated than the associated blog.
It is written in the style of a novel not a scientific paper.
· There are plenty
of topics covered and personal anecdotes that have no science involved.
· Read only what
you want to; skip over any parts that don't matter to your circumstances. The
book does repeat itself sometimes because it is assumed that people will read
selectively, based on what is most useful to them.
· Understand that
this book is focused on personal experiences, including interactions with a
wider community of people looking for answers. This means a lot of ground is
covered but some is left out.
· Understand that
this book is focused on what can be done for the brain, which is, of course,
connected to the rest of the body; however, that focus means that some information
is not included.
· Make use of the
blog, which is searchable, and contains far more detail and information.
Throughout the book you will be given suggestions as to how to use search terms
to access specific information on the blog but you can do this this for any
topic. https://www.epiphanyasd.com/
· Google terms that
are new to you, but don't be concerned if you cannot understand the more
scientific ones. Not completely grasping terms like DHCR7 will not impede
your understanding of the book.
· The index is
meant to benefit you for finding all the references to a single topic.
Contents of the book
|
The Author |
1 |
|
Preface Why I
wrote this book |
3 |
|
|
|
|
Part 1 – Living in a Bubble |
7 |
|
A personal
journey into adulthood |
|
|
|
|
|
Part 2 – Tips and Tricks learnt along the
way |
41 |
|
Another
easy read |
|
|
|
|
|
Part 3 – Autism 101 |
131 |
|
A
simplified overview of the science and its application
to better understand autism |
|
|
|
|
|
Part 4 – Treating Autism using Personalized
Medicine |
195 |
|
An
introductory perspective to a complex subject
|
|
|
Part 5 – A to Z of Drugs used in Autism Clinical
Trials Who thinks
there isn’t enough autism research?
|
243 |
|
Part 6 – Preventing Autism |
291 |
|
What to do
about the autism tsunami |
|
|
|
|
|
Take Home
Message
|
309 |
|
Index |
311 |
Details
of the paperback book and eBook
Game Changer is available as a
paperback book
·
Paperback : 330 pages
·
ISBN-13 : 979-8847843287 (International
Standard Book Number)
·
ASIN : B0BRJ88RJD (unique stock number
for Amazon websites)
And as an ebook for anyone who has the Kindle software on their tablet/phone or a Kindle device
·
ASIN : B0BRQVB1J3 (unique stock number for Amazon websites)
·
Print length : 388 pages
How to
obtain a copy of the paperback book?
1. From your local Amazon website
Larger
Amazon markets like the US, UK and Germany have their own Print on Demand
facility and can print and ship the book very quickly. In the UK it takes in 1-3 days, a few days
longer in EU.
For
some Amazon markets, like Canada, it takes a few days longer. For
Canada, the books are printed in the US. For Hong Kong Amazon delivers cheaply
from the US.
Shipping
from an Amazon website to most foreign countries can get expensive. It is better to use the Book Depository
website, when the book gets listed there.
To
find the book on your local Amazon site enter
“Game
Changer Lloyd Thomas”
or
Amazon’s
product code B0BRJ88RJD
or
by the book's IBSN 979-8847843287
Direct links to the book for some Amazon sites are below:
Just seeing Monty’s face made my day!
ReplyDeleteCongratulations Peter on this achievement. I hope many more parents benefit from the book and feel hopeful after reading your book.
Anvesh
Congratulations, ordering my copy !
ReplyDeleteSB
Congratulations Peter! What a wonderful resource for families. Nice to see your son on the cover - handsome young man.
ReplyDelete~Tanya
300+ pages would be an amazing amount of effort for any individual covering such a complicated scientific subject such as autism if they were a professional scientist, but even more amazing for a layperson parent such as yourself (and many others who read your blog) who had could of just buried their head in a pillow and trust the "experts", or else put in the enormous effort necessary to self-train themselves into being a a true expert who is both capable and brave enough to put out a book that I am pretty sure challenges a lot of the orthodoxy in how autism is typically treated today.
ReplyDeleteIt is also very inspiring to see you finally got this project done after all of these years reading and commenting on your blog, especially since it seems not a lot has been happening in the autism scientific community these days, and especially since COVID as the quality and quantity of scientific reseach papers has seemingly taken a permanent nosedive in the last several years. This seems especially true concerning research into autism treatments as from what I have seen almost all of the formal research papers in the autism space are more or less derivations of GWAS that seem completely disconnected from any attempts at improving the lives of individuals with autism in the long run.
It is very refreshing to see all of your efforts being culminated into this book which I will do my best to spread far and wide to everyone I know. I will be sure to order a copy for myself and some of my extended family as well who to this very day do not really understand what autism actually is and the challenges my families like ours face on a day to day basis. Congratulations (one of many I am sure you will get in this thread).
Thanks Tyler, we have all missed your comments. I hope all is well with you.
DeleteIndeed we have. :-) One day I hope to read about the outcome of Tyler's electrical endeavors here too.
DeleteAnd I loved to see Agnieszka's name fly by... just like in ..2018? So many years, so many bright parents on the blog. You taught me well.
/Ling
I agree Ling. I’ve loved reading the contributions from other parents too, over the years. I know this isn’t a “support group”, but Tyler and agnieszka I’d love to hear how things are going. Also I remember reading posts from “aspie” - would love updates. But understand if people aren’t up for that. Peter, your blog is the only thing I recommend. Just bought your book in support - spreading the word. A seasoned voice of reason and message of keeping searching and trying.
Delete~Tanya
Tyler! Man, we've missed your posts. Do you have a way to get in touch like maybe on Facebook or some other platform? It'd be great to hear about what you're currently doing with your kiddos treatment and how they are progressing. Also had a few questions about the aspartic acid therapy posts from awhile back. Stay sane out there, it's still quite a wild clown show! ;)
DeleteMKate
I forgot AJ! Hope things are at least stable with all
Delete~Tanya
Just ordered! Congratulations Peter.
ReplyDeleteCongrats Peter! Ordered my copy too.
ReplyDeleteCongratulations Peter!
ReplyDeleteLisa
Congratulation Peter! Loved the cover page.
ReplyDeleteJust ordered the copy on Amazon. Thank you and congratulations đ
ReplyDeleteJust ordered it on Kindle. Super grateful to have stumbled upon this blog and now the book is the culmination of your wisdom and unselfish sharing.
ReplyDeleteCongratulations, Peter. Just shared the book's link with the online PANS parents' community of 22thousand. What a role model of a determined and brave Father you are. Eszter
ReplyDeleteThanks Eszter for sharing the link.
DeleteThanks for all you do. Just had my copy delivered from Amazon.
ReplyDeleteI don't think there has been a quicker purchase than me getting your book. I already know it will be an amazing read. Thanks so much.
ReplyDeleteGreat news and congratulations Peter. Can't wait to read through, waiting my order arriving tomorrow. Timur.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteMy most sincere congratulations Peter to this great achievement! I look forward to have your book in my hands - and put it into other hands in need of it. :-)
ReplyDeleteThe photo of Monty made my day too, a wonderful surprise.
/Ling
Well done, Peter and Monty!
ReplyDeleteThat's quite a smart and handsome looking young man on the cover. I'm forever grateful to you both for all you've done and shared with us. You've been a game changer indeed, Peter. Here's to better days ahead for all of our children.
MKate
Congratulations Peter!
ReplyDelete-Martin
Thanks for all the nice comments !!!
ReplyDeleteHi Peter.
ReplyDeleteI commented earlier as anon about my 4 year old verbal but not yet conversational son from UK. I started on NAC (solgar brand. i mix half of it in orange juice . 300mg twice daily. yet to see changes. some times he eats something soon after . do you think it needs to be strictly given empty stomach?
From mobile when I try to fill dr. Antonucci contact form its not working. the captcha image isue. will soon contact him via laptop.
in your book you mentioned Write from start handwriting. i see good reviews of it and ordered. will that help my soon to be 4 year old?
He is also hyperactive, keeps running, jumping, does his scooter and okish of balance bike so can I add Agmatine? or is it too early.
Thanks
If he is hyperactive Agmatine likely will not help.
DeleteWrite from the start is a great book, but you will need to photocopy the exercises and spend many hours practicing.
NAC does not help everyone. In those that respond you need to give it 3 or 4 times a day. You do not need to give it with food.
Calcium folinate is the therapy claimed to increase speech. Some people have a negative reaction. There is a blood test sold in the US.
Thanks for quick reply.
Deletei will search more on Calcium folinate
Hi Peter
ReplyDeleteHow can you know if a genetic mutation is the cause?
My son had a private whole genome test, lots of rare mutations some pathogenic but apparently only 7% pathogenic genes cause disease.
Hi Peter! I just finished reading your book and I have to say that I really enjoyed it. Your personal story and journey with autism is truly inspiring. I can definitely relate to your experiences as my own son, who is now 8 years old, was also diagnosed with autism at a young age.
ReplyDeleteI would like to suggest that you consider creating a more in-depth and professional version of your book, perhaps with additional references and a distilled epiphanyasd blog.
As someone with a background in pharmacy, I have found that biomedical interventions using over-the-counter drugs and supplements have been most effective in our own journey.
In particular, I have found that the use of ALA, applied according to the ACC protocol, has been the backbone of our success. Our son's oxidative stress was linked to mercury toxicity, and he also experienced oxidative stress and immune imbalances due to vaccine injury. Addressing gut dysbiosis was also an important step, which led me to pursue a master's degree in gut-brain axis health. Additionally, we worked to address gliosis and neuroinflammation, as well as dormant viruses, all of which helped to move our son out of the realm of autism. we started 76 on ATEC score and we are now around 5.
I share this with you in the hopes that you may revisit the link between mercury and autism. There is quality research available that demonstrates a mechanistic link between mercury and every single circle of your multifactorial model. While it may not be the sole contributor to autism, it is certainly a vital one.
Lastly, I wanted to suggest that you look into the Melillo Method and his functional disconnectivity theory as a potential early intervention, particularly for individuals on the Asperger's spectrum. I believe this approach has great potential and could be an excellent addition to your book.
Thank you again for sharing your story and knowledge with the world. I would love to continue our conversation and share more about our respective journeys with autism.
Gabana
Deletewhat diet did you follow ?
DeleteGF/ CF?
can you list down what supplements and theraphies has been successful in treating your son.
TIA
hi, plz comment your list drug and supplement you used. its very important. tks so much and wait your experience
DeleteYes we used CF GF everything free, but that was even before we started to suspect his ASD.
DeleteIt was a four years journey so I will give headlines for the interventions we did
1- Diet as I mentioned was even before the diagnosis
2- Andy Cutler Cheathion protocol we did well above 120 rounds
3- Addressing SIBO first with standard empirical herb and Biofilm protocols and then test for the Microbiome and did personalize pre pro and postbiotics plus herbs (this is my area of expertise)
4- neuroinflamation by Rg3 PEA (Glialia) and Tributyrin high doses
5- Cherab speech protocol with my own modifications by saturating the body with high doses omega 3 first
6- Comprehensive anti viral protocol with vitamin A olive leaf extract NAC Baicalin and Enzymedica Anit V formula
Of course we worked on methylation and used Folinic acid from IHerb for the very beginning plus mito support and HPA support (which included a lot of potassium). If anyone can Arbic I have documented all our story on YT FB search for Autism&Me
Thank you so much. Can you share the link please for autism&me . i am getting many YT videos.
DeletePls share your document I will try to get it translated.
Deleteso exacly the drug and supplement you used and how much the dose guy. you used low dose dmsa and ala 120 round and then used high dose dha epa ? and before you used leucovorin ?
DeleteThank you for the book Peter. I hope it can reach many parents!
ReplyDeleteCongratulations Peter and thank you from the bottom of my heart for your blog. Thanks to you, I woke up and realized that if I was waiting for our pediatrician to do something for our daughter, it's not going to happen anytime soon. You and give me hope that autism can be treatable. I order your book today, thank you for your dedication to help others.
ReplyDeleteHello Peter,
ReplyDeleteMany thanks for writing this book, I've just ordered it and look forward to reading it. Our son has just turned 4 and is now talking (with difficulty) but still anxious and obsessive so we suspect some atypical neurology. It's great what resources you have given us and helps me relax knowing we have options to explore.
Thanks again,
Loza
Hi Peter, Enjoying your book, reading through PDE inhibitors section. is it fair to say Pentoxifyline is more benign (in terms of upsides vs side effects) compare to Pioglitazone? but i noted that your preferred choice for your son was the latter. Any high level view to share for your choice? did you just try both and stick with the latter? thanks, Teymur
ReplyDeleteI tried a low dose of Pentoxifylline and did not see an effect. Some people take it 4 times a day and do see a cognitive gain. One mode of action is increased blood flow to the brain.
DeletePioglitazone is a PPAR gamma agonist and should have several potentially beneficial effects.
The 2 drugs have different effects and both are worth a trial.
Hi Peter, thank you so much for writing this book in addition to authoring blog posts here on epiphanyasd frequently; I wanted to ask, does this book specifically contain information on (self)-treating Asperger's..?
ReplyDeleteI recall that I noted a post of yours mentioning "micro dosing of Lysergic acid diethylamide (LSD) promotes social behavior via 5-HT2A/AMPA receptors and mTOR signaling" which greatly piqued my interest, considering I believe you've also mentioned anecdotal evidence showing it helps Aspies greatly.
Information pertaining to Aspie-specific options like the above and many other lines of inquiry you've mentioned in this blog before, condensed into a more straightforward 'guide', would make me want to purchase the book immediately if such is contained within!
Thanks,
-S
The book is a simplified version of this blog addressed to those broadly interested in autism. Most will be parents of those with level 3 autism, I imagine.
DeleteIf you want all the details, read the blog. There is much more detail. For most people the blog is too detailed. Everyone has a different set of interests, so you cannot satisfy everyone.
This comment has been removed by the author.
DeleteHi Peter, thank you for the prompt response!
DeleteI will certainly do a 'deep dive' into the blog this weekend when I am not working and have much more free time... just out of curiosity, do you have any sort of Asperger's 'mega-post' / lengthier blog post detailing treatment options and the science behind it versus much more severe (level 3) autism?
I am not against devoting time to peruse your many articles, and will certainly do so, just not sure if there is a best "point of entry" on your blog roll so to speak with Asperger's in particular.
-S
There is no mega-post for Aspies.
DeleteI am surprised that many of the level-3 therapies seem to help some Aspies. OTC therapies that get used include NAC, Agmatine, Ponstan etc.
There is a successful Aspie lady who uses Humira, which is a potent drug targeting IL-6. That is something you would think of as just for level 3.
I very much doubt Bumetanide will benefit Aspies.
Baclofen seems to be good for many Aspies, but not all.
Antioxidants, anti-inflammatory drugs, drugs for sensory gating (Daxas, nicotine etc) all might help.
5-HT2 drugs are used by some Aspies. In most countries they are not legal. Psilocybin is being evaluated in a serious trial.
https://www.clinicaltrials.gov/ct2/show/NCT05651126
It seems to work for some Aspies.
Peter, well whether Aspie equates with Level 1 is perhaps an issue, but my son DOES respond to bumetanide and I don't ever want to stop it, having tried a few times. Some doctors say he is Level 2 - moderate, but the jury is out on that debate (for me he is more NVLD profile, something else half the doctors or more discount). Thanks for all you do!
ReplyDeleteMira, can you share with us in what ways does your son benefit from Bumetanide?
DeletePeter, I bought my copy and will share the amazon link with local list serves of parents of affected children. Huge thanks and congratulations, Mira
ReplyDeleteHello, I told you that I am coming with new results, a great achievement, I solved the problem of mastocytosis very simply and easily, I waited a month so that I could believe it myself, stop tormenting yourself with different kinds of drugs that only do a delusion and they are also harmful, that things are going well, a single natural cocktail solved this damn histamine that we have been fighting with for years.... finally he can eat anything and his skin is as clean as a baby's.. ..and I hope to give you the solution to this autoimmune encephalitis, triggered by the MMR or MMR vaccine from the 2nd year of birth...you have to be a little more patient....Everything depends on our immune system on which God left us........so our doctors should think but they didn't do it....everything is related to the digestive and immune system, the neutrophils oxidize before they can fight with bacteria, viruses and fungus
ReplyDeletePeter,
ReplyDeleteJust saw your question.
The bumetanide makes him less agitat-able. Generally, he can have emotional dysregulation when something surprises him, interrupts his focus/speaking, alters his plans, and so on. To the extent that getting anything done was very difficult. By now he is on other medications which also help. But when we started with the bumetanide we found that the sharpness, intensity, duration, and frequency of these over-reactivity episodes were lessened. At the time, my estimate was a 15-20% reduction and I was being conservative so as not to overstate. We took him off it a few times but so far I have always put him back on it. I am actually fearful of removing the bumetanide.
So I would say it reduces over-reactivity for us. As well, we found that he was more present with us. Those are the two main effects.
Of course these are very important because these effects are supportive of his being more able to engage in joint activities, whether this be family dinner, school classes, or after school activities. If you are always distressed and over reacting and overwhelmed, you cannot participate well, you cannot build your skills, you cannot learn to ask questions and accept mistakes. Similarly, if your thoughts are obsessively trained on a rumination, or on a video game you would prefer to be playing, that is a significant problem. These challenges have not gone away but they are not as monolithic or dense as they were before bumetanide. In fact, my son has made important strides in getting up to grade level in math (a weak area for him versus verbal/artistic abilities -- why we think of him as having an NVLD profile) because he was finally able to learn how to show his work step by step. Patience and tolerance are required for this and bumetanide supported that.
We give him potassium every day, a banana whenever he will have it, and we test his potassium levels every 6-12 months (now that the routine is established). The doctor used to require it to be done 3-4 times per year.
Thanks,
Mira
Mira, thanks for the explanation.
Deletemira, how long you see bumex effect
DeleteVery interesting article here, you might have seen already, just posting for the folks:
ReplyDeletehttps://link.springer.com/article/10.1007/s13311-022-01183-1
Most of these are covered in your book already. Some of it very new to me.