An army of parents have been doing kitchen-sink science to look at cause and effect in their children with autism for decades. This has been backed up by a mountain of scientific research into the abnormal biology manifest in the immune system, bowel, brain and biochemistry of our kids. Despite this, clinical education and practice remains stuck in the past. This post outlines why we need Kennedy to succeed in his mission to implement common sense into the autism wars.
Whatever the cause, I still see the obvious fact of Amish kids not having the syndrome. They do not vaccinate. Unless someone can make those two facts disappear, I identify the childhood vaccine schedule for damaging our children. An immediate cessation is in order. Lets see what happens if we go back to being "natural" humans.
We gave our son antihistamine- piriton sometimes during his more crazy episodes to help him sleep as well as magnesium & vit d together.
However he is nearly half your son`s age so not sure if it will be as effective.
We started giving him Saccharomyces Boulardii 5 probotic a few months ago and noticed a small improvement in things. As they say there`s a supposed link between stomach bacteria & autism behaviour.
well done! yes those mast cell flares (histamine from hell!) can be insane. my friend (and mentor mentioned above) has lived through and successfully treated violent episodes in her older boy, with mega dose antihistamine but at times had to resort to emergency dosing with Rx sedatives. when you're talking about an uncontrolled violent outburst from a 6' 3" 22 yr old... yeah. he has injured her and done significant damage to their home, car, etc. he is stable now and even accepted into a group home, part time. healing is always possible!
Hi Mike thanks for posting. There is a massive link with the gut - certainly in our experience. We found diet transformational. If you are in the UK I can recommend a good team of nutritionists who see a lot of children like ours.
bravo, Jane! 100% spot on and almost totally reflective of the same experiences moms like ME have had on THIS side of the pond!
we could not and still CANNOT wait for the mainstream/allopathic medical community to catch up to what we, as parents and our few, brave clinicians & researchers, have just gone and done on our own. we were FORCED to do what you term 'kitchen-sink' science and I'll be damned if it isn't BETTER science than the mainstream, false-consensus establishment even cares to produce. you see because to do so, they would have to concede that our kids' have very real MEDICAL issues (among many other things they would be forced to concede that we don't even need to mention, right? ;) ) we've left them behind and good riddance. yeah I know we still have to have one pinkie toe in the allopathic world, with a GP 'of record' and the like. we don't have one but still, I understand the necessity; same over here and going thru the motions to keep active to continue whatever benefits we can glean from the PTB. (we see an internationally practicing integrative internist who is on the steering board of the MAPS group of clinicians)
sounds like you are completely on top of the situation with your son, as far as understanding of the medical science to date. so PLEASE Jane, allow me to hook you up with MY brilliant treatment mentor & close friend. she's a certified health coach (but so MUCH MORE!) The mom of two young adult son's with autism; one severe, non-verbal, the other higher functioning but still with significant medical issues. she has helped countless kids exactly like you describe your son. no exaggeration!
seriously Jane, direct message me on Substack and I will speak with her in a few days and get you admitted to our private online mentoring group. from there, you can arrange online/phone appts with her (she has a large international client list). you already have the info that she requires to start you out (gene mutation reports and symptom journaling, which is HUGELY important.)
my heart aches for your family and your dear son's suffering! I am positive that my amazing friend can help! seriously, 100%.
Thanks for being such a supportive reader. It means alot. I don't know how to contact you direct on substack ... if you can DM me, I will reply and you'll have my email address. It is great to share experiences. Since we started helping our son we've met some brilliant people. It's also now a lot easier to find things online and access the research papers which is incredibly helpful.
I sent a direct message thru Substack. you should see notification of it.
I don't doubt that you've managed to hook up with amazing, brilliant people; that you know about specific gene mutations, tracking moon phases, implementing diets... you definitely got it going on, Jane. but it sounds like you hit a plateau with your son and my mentor might have a missing puzzle piece for you. who knows. ?? new perspectives are always worth a look!! if you're willing, we'll chat :)
Traci, YES. This is it it it. I’m also a mom of two non-speaking kids with profound autism, and my kitchen sink is where the real science happens. We didn’t OPT our we were LEFT out. So we built our own frameworks, tracked our own data, and found the few clinicians who actually saw our kids. Your clarity, your fire - it’s everything. I’ve followed your voice quietly, but this piece brought us all to the same table. Thank you for holding the line - i would be honored to connect and stand alongside you. I write over on my Substack at from the thick of it, just like you. I’d be honored to stay connected and continue building this tribe.
'inchstones', I LOVE it! yes, a thousand time yes! WE are real science, we've had to do it on our own since nobody was interesting in doing it for us.
my mentor likes to start lectures by asking a group (of usually newbie moms) 'who's your child's primary care doctor?' I few will sheepishly say a name and she will shout, "NO! its YOU! YOU are their primary everything. YOU know them best; YOU see them every day. in this game, you cannot simply hand your child over and say 'fix them'. that's for YOU to do. we can help but YOU do the real work!"
Thank you, Jane. You say many true things that need to be said. Let me add:
- The behaviors that we measure to produce an autism diagnosis must have some biological cause or causes.
- We don't yet know what those biological causes are. We're hardly looking for them. Even the best work on biomarkers, which could be very helpful, is touted as being helpful for diagnosis. That does't make sense. Perhaps it's politically acceptable.
- Mainstream medicine doesn't know much about the biology underlying autism. That's because there is very little effort to understand that biology, publish it and teach it in med schools. That is almost entirely not under the control of doctors.
- So the question is, why aren't those responsible for funding, directing and performing research looking seriously for the biological causes of the behaviors we call autism? While everyone can speculate, you won't find a solid answer in credible sources.
I've been following this, as a parent of a girl, now woman, with autistic disorder, now called severe or profound autism, since 2001. I looked so hard, and was so disappointed in what I could find, that I went back to medical grad school and became an epidemiologist.
My informed speculation is that there are a few key reasons NOT to look seriously for autism biology. One of the main ones is the fear by many that even admitting there is a problem to solve might add fuel to the vaccine-blaming movement. So they simply deny the problem. But unfortunately their fear is justified. It shows up in the current news storm about RFK Jr. So we make no progress.
Here is my urgent request to all: No matter what you believe about any possible relationship between autism and vaccines, don't keep talking about it. Every time someone says that autism is a problem and they think it's caused by vaccines, it just hardens the resistance by those in power to even admitting there's a problem or doing anything about it.
If we do the science correctly — it's still not happening and not about the happen — we will figure out the truth, whatever that may be. Then we will have our answers. We cannot pursue truth by claiming to know the answer in advance.
Hi Alexander thanks for such a thoughtful response. You have obviously been on a long journey like us. I am very hopeful about Kennedy because he is serious about getting answers and is in a position to back a proper research effort. He is also funding people to look at a list of possible causes and it will be very good to see what transpires.
I used to think the same way as you about the V-word but not any more. Things have gone beyond being nice to people ... look at the aftermath of the forced covid jabs. Many more people have now experienced the reality of vaccine damage. In the past I always told people the truth if they asked - in our case, the decline came after an MMR and Meningitis C jab on the same day - given to a very small boy with a family history of immune problems. No doctor should ever sanction such action. I've written about it on another post- and you can find it in my archive.
Other people may have autism from birth due to in-utero immune assaults and it might not just be about vaccines but the numbers of cases correlates to the growing vaccine schedule ... and I would advise all parents to decline them (wish I'd been stronger in that sentiment 20 years ago).
the 'in-utero' part is SO important, Jane. when moms are getting jabbed up while pregnant (which used to be considered unthinkable 25 yrs ago!) there's now no way to tell - they've erased the base line. new parents literally don't know what a healthy child is supposed to look like anymore!
there is quite a bit of science (published in off-the-beaten-path types of journals, mostly) that keeps pointing towards vaccines as one, major culprit but it seems to dance around the issue by looking at specific vaccine components and the like. still, solid science yet studiously ignored by the mainstream. like the old saying: easy to ignore a thing when your paycheck depends on it.
that said... when hundreds of thousands of parents observe their healthy child regress, around about age 2, directly post vaccination, I think any intelligent person with decent critical thinking skills (and not card-carrying members of the church of the Holy Vaccine) would consider that more than just antidotal. we are definitely way beyond that and hopefully the current controversy will help bring that to the fore. every single new person who now 'questions' the paradigm, is progress.
There is no mention of books like 'Denial', and JB Handly's two books ( one with his autistic son), nor the well referenced books (on children vaccinated/ unvaccinated). by RFK Jr. & Hooker, and "Turtles all the way down ; Vaccine science and myth'. Perhaps everyone has read them ? I am bemused that there is any doubt that vaccines have a significant and large part to play, except that the extent of ' regulatory capture' is such that pertinent and crucial facts ( about many things apart from vaccines ) are kept carefully out of the public domain, by the MSM, professional journals ( except that the BMJ rapid responses website has in the past, remarkably., posted some telling responses. But never repeated them in the printed edition) and the friends of pharma, etc . What about Chris Exley, his remarkable book on Aluminum ( it was meant especially for the N American Market - hence the spelling ) and his Univ depts demonstration of the presence of Alum in autistic teenagers brains ? Met with incriminating silence by journals, journalists, et al . The huge ongoing increase in suffering as autistic children and their parents attest, brings tears to one's eyes as celebrities et al make much of a few autistic symptoms in adulthood. Such autistic symptoms were described 30 + years before Kanner's work on childhood autism, by Emil Kraepelin, were they not ? .
As a mother of two profoundly autistic, non-speaking children, I write *literally* and metaphorically from the kitchen sink. That is my lab bench, my war room, my front line. Jane- your words echo the silent truths that so many of us witness every day: progress is real, even when it’s nonlinear, hard to quantify, or invisible to the institutions that set the metrics!Kitchen sink science isn’t about anecdote over evidence I believe it’s about recognizing that most of the world’s institutions weren’t built with our children in mind. And until they are, parents must build our own epistemologies- very precise, methodical, loving, and fiercely intelligent.
From where I stand, your work isn’t just valid and vital. It’s what real-world adaptive intelligence looks like - the kind that doesn’t wait for peer review to act, but still deserves the world’s respect. Thank you for giving voice to what so many of us live and know to be true.
Interesting thought experiment on autism in the UK.
Most estimate 2 million autistic people in the UK in 2025. That about matches the 68 million pop & 1 in 31 figures quoted by CDC, however we are largely talking about the under 25s.
It also matches anecdotal evidence these days with everyone knowing someone dealing with autism, usually if not directly either a parent friend, work colleague, neighbour etc..
So if 1/3 are severely disabled by autism that’s 666,000 people with severe autism in the UK. The 1/3 severe autism is wrong since the real figure is 46% adding Intellectually Disabled at 8 and those in borderline range together bring it up to over ½ which would be about 1.1 million adults & children in need of full time care & support because they are Autistic inc Intellectually Disabled. There are other disabilities to add on too that impacts those with autism like epilepsy , memory problems which is why only about 16% are in employment.
That leaves probably 1.6 million disabled autistic people in the UK probably on DLA benefit, which matches the 1 in 10 both adult & child is disabled figures by UK gov.
But lets pretend for a moment the 1/3 or 666,000 is accurate, which means if autism hasn’t grown as authorities say and they were the same as 1985 allowing for 25% population increase there should have been approx. 500,000 in the UK with severe autism then.
But no one remembers ever seeing anyone who was non-verbal, toe walking, stimming & deeply intellectually disabled. Old teachers don’t remember them, 50 year olds never had a friend at school who`s brother or sister was dealing with that, 80 year old women who picked their kids up at the school gates in the 60/70& 80s don’t remember either.
Critics say its because they were locked up and hidden from society.
So they are saying the UK locked up 500,000 kids up and nobody knew anything.
The Uk prison population in 1985 was 46,278
The Uk army in 1985 was approx. 153,000
So what would they have needed to lock up 500,000, the doctors, the nurses, the staff, the cleaners, the cooks. They would have been huge ominous buildings where huge numbers of kids were known to be kept, but no one said anything.
I agree Mike - this is a good way to think about it. We know there weren't the same numbers when we were growing up. We also know that the people coming out as autistic in adulthood - and are being encouraged to do so - may have problems but nothing like the severity faced by our children. There is no way anyone could miss the obvious disabilities in my son. What's more, he was in mainstream and then special schools for years are couldn't learn to read or write. You can't 'mask' that. If we keep pushing vaccines I fear the numbers will keep rising further and the costs (social and economic) are already too great to bear. The weird thing is that the people in charge are so complacent and willfully ignoring the whole thing, blathering on about neurodiversity.
Whatever the cause, I still see the obvious fact of Amish kids not having the syndrome. They do not vaccinate. Unless someone can make those two facts disappear, I identify the childhood vaccine schedule for damaging our children. An immediate cessation is in order. Lets see what happens if we go back to being "natural" humans.
We gave our son antihistamine- piriton sometimes during his more crazy episodes to help him sleep as well as magnesium & vit d together.
However he is nearly half your son`s age so not sure if it will be as effective.
We started giving him Saccharomyces Boulardii 5 probotic a few months ago and noticed a small improvement in things. As they say there`s a supposed link between stomach bacteria & autism behaviour.
well done! yes those mast cell flares (histamine from hell!) can be insane. my friend (and mentor mentioned above) has lived through and successfully treated violent episodes in her older boy, with mega dose antihistamine but at times had to resort to emergency dosing with Rx sedatives. when you're talking about an uncontrolled violent outburst from a 6' 3" 22 yr old... yeah. he has injured her and done significant damage to their home, car, etc. he is stable now and even accepted into a group home, part time. healing is always possible!
Hi Mike thanks for posting. There is a massive link with the gut - certainly in our experience. We found diet transformational. If you are in the UK I can recommend a good team of nutritionists who see a lot of children like ours.
bravo, Jane! 100% spot on and almost totally reflective of the same experiences moms like ME have had on THIS side of the pond!
we could not and still CANNOT wait for the mainstream/allopathic medical community to catch up to what we, as parents and our few, brave clinicians & researchers, have just gone and done on our own. we were FORCED to do what you term 'kitchen-sink' science and I'll be damned if it isn't BETTER science than the mainstream, false-consensus establishment even cares to produce. you see because to do so, they would have to concede that our kids' have very real MEDICAL issues (among many other things they would be forced to concede that we don't even need to mention, right? ;) ) we've left them behind and good riddance. yeah I know we still have to have one pinkie toe in the allopathic world, with a GP 'of record' and the like. we don't have one but still, I understand the necessity; same over here and going thru the motions to keep active to continue whatever benefits we can glean from the PTB. (we see an internationally practicing integrative internist who is on the steering board of the MAPS group of clinicians)
sounds like you are completely on top of the situation with your son, as far as understanding of the medical science to date. so PLEASE Jane, allow me to hook you up with MY brilliant treatment mentor & close friend. she's a certified health coach (but so MUCH MORE!) The mom of two young adult son's with autism; one severe, non-verbal, the other higher functioning but still with significant medical issues. she has helped countless kids exactly like you describe your son. no exaggeration!
seriously Jane, direct message me on Substack and I will speak with her in a few days and get you admitted to our private online mentoring group. from there, you can arrange online/phone appts with her (she has a large international client list). you already have the info that she requires to start you out (gene mutation reports and symptom journaling, which is HUGELY important.)
my heart aches for your family and your dear son's suffering! I am positive that my amazing friend can help! seriously, 100%.
Thanks for being such a supportive reader. It means alot. I don't know how to contact you direct on substack ... if you can DM me, I will reply and you'll have my email address. It is great to share experiences. Since we started helping our son we've met some brilliant people. It's also now a lot easier to find things online and access the research papers which is incredibly helpful.
will do, Jane.
I sent a direct message thru Substack. you should see notification of it.
I don't doubt that you've managed to hook up with amazing, brilliant people; that you know about specific gene mutations, tracking moon phases, implementing diets... you definitely got it going on, Jane. but it sounds like you hit a plateau with your son and my mentor might have a missing puzzle piece for you. who knows. ?? new perspectives are always worth a look!! if you're willing, we'll chat :)
Traci, YES. This is it it it. I’m also a mom of two non-speaking kids with profound autism, and my kitchen sink is where the real science happens. We didn’t OPT our we were LEFT out. So we built our own frameworks, tracked our own data, and found the few clinicians who actually saw our kids. Your clarity, your fire - it’s everything. I’ve followed your voice quietly, but this piece brought us all to the same table. Thank you for holding the line - i would be honored to connect and stand alongside you. I write over on my Substack at from the thick of it, just like you. I’d be honored to stay connected and continue building this tribe.
'inchstones', I LOVE it! yes, a thousand time yes! WE are real science, we've had to do it on our own since nobody was interesting in doing it for us.
my mentor likes to start lectures by asking a group (of usually newbie moms) 'who's your child's primary care doctor?' I few will sheepishly say a name and she will shout, "NO! its YOU! YOU are their primary everything. YOU know them best; YOU see them every day. in this game, you cannot simply hand your child over and say 'fix them'. that's for YOU to do. we can help but YOU do the real work!"
BINGO.
(my mentor likes to refer to her youngest as "pre verbal", meaning that she will never stop working & hoping :) )
YES. YES. (!!!)
Thank you, Jane. You say many true things that need to be said. Let me add:
- The behaviors that we measure to produce an autism diagnosis must have some biological cause or causes.
- We don't yet know what those biological causes are. We're hardly looking for them. Even the best work on biomarkers, which could be very helpful, is touted as being helpful for diagnosis. That does't make sense. Perhaps it's politically acceptable.
- Mainstream medicine doesn't know much about the biology underlying autism. That's because there is very little effort to understand that biology, publish it and teach it in med schools. That is almost entirely not under the control of doctors.
- So the question is, why aren't those responsible for funding, directing and performing research looking seriously for the biological causes of the behaviors we call autism? While everyone can speculate, you won't find a solid answer in credible sources.
I've been following this, as a parent of a girl, now woman, with autistic disorder, now called severe or profound autism, since 2001. I looked so hard, and was so disappointed in what I could find, that I went back to medical grad school and became an epidemiologist.
My informed speculation is that there are a few key reasons NOT to look seriously for autism biology. One of the main ones is the fear by many that even admitting there is a problem to solve might add fuel to the vaccine-blaming movement. So they simply deny the problem. But unfortunately their fear is justified. It shows up in the current news storm about RFK Jr. So we make no progress.
Here is my urgent request to all: No matter what you believe about any possible relationship between autism and vaccines, don't keep talking about it. Every time someone says that autism is a problem and they think it's caused by vaccines, it just hardens the resistance by those in power to even admitting there's a problem or doing anything about it.
If we do the science correctly — it's still not happening and not about the happen — we will figure out the truth, whatever that may be. Then we will have our answers. We cannot pursue truth by claiming to know the answer in advance.
Hi Alexander thanks for such a thoughtful response. You have obviously been on a long journey like us. I am very hopeful about Kennedy because he is serious about getting answers and is in a position to back a proper research effort. He is also funding people to look at a list of possible causes and it will be very good to see what transpires.
I used to think the same way as you about the V-word but not any more. Things have gone beyond being nice to people ... look at the aftermath of the forced covid jabs. Many more people have now experienced the reality of vaccine damage. In the past I always told people the truth if they asked - in our case, the decline came after an MMR and Meningitis C jab on the same day - given to a very small boy with a family history of immune problems. No doctor should ever sanction such action. I've written about it on another post- and you can find it in my archive.
Other people may have autism from birth due to in-utero immune assaults and it might not just be about vaccines but the numbers of cases correlates to the growing vaccine schedule ... and I would advise all parents to decline them (wish I'd been stronger in that sentiment 20 years ago).
the 'in-utero' part is SO important, Jane. when moms are getting jabbed up while pregnant (which used to be considered unthinkable 25 yrs ago!) there's now no way to tell - they've erased the base line. new parents literally don't know what a healthy child is supposed to look like anymore!
there is quite a bit of science (published in off-the-beaten-path types of journals, mostly) that keeps pointing towards vaccines as one, major culprit but it seems to dance around the issue by looking at specific vaccine components and the like. still, solid science yet studiously ignored by the mainstream. like the old saying: easy to ignore a thing when your paycheck depends on it.
that said... when hundreds of thousands of parents observe their healthy child regress, around about age 2, directly post vaccination, I think any intelligent person with decent critical thinking skills (and not card-carrying members of the church of the Holy Vaccine) would consider that more than just antidotal. we are definitely way beyond that and hopefully the current controversy will help bring that to the fore. every single new person who now 'questions' the paradigm, is progress.
There is no mention of books like 'Denial', and JB Handly's two books ( one with his autistic son), nor the well referenced books (on children vaccinated/ unvaccinated). by RFK Jr. & Hooker, and "Turtles all the way down ; Vaccine science and myth'. Perhaps everyone has read them ? I am bemused that there is any doubt that vaccines have a significant and large part to play, except that the extent of ' regulatory capture' is such that pertinent and crucial facts ( about many things apart from vaccines ) are kept carefully out of the public domain, by the MSM, professional journals ( except that the BMJ rapid responses website has in the past, remarkably., posted some telling responses. But never repeated them in the printed edition) and the friends of pharma, etc . What about Chris Exley, his remarkable book on Aluminum ( it was meant especially for the N American Market - hence the spelling ) and his Univ depts demonstration of the presence of Alum in autistic teenagers brains ? Met with incriminating silence by journals, journalists, et al . The huge ongoing increase in suffering as autistic children and their parents attest, brings tears to one's eyes as celebrities et al make much of a few autistic symptoms in adulthood. Such autistic symptoms were described 30 + years before Kanner's work on childhood autism, by Emil Kraepelin, were they not ? .
Hi Noel I have seen almost all those books and get Chris Exleys emails and they are incredibly helpful. Agree!
As a mother of two profoundly autistic, non-speaking children, I write *literally* and metaphorically from the kitchen sink. That is my lab bench, my war room, my front line. Jane- your words echo the silent truths that so many of us witness every day: progress is real, even when it’s nonlinear, hard to quantify, or invisible to the institutions that set the metrics!Kitchen sink science isn’t about anecdote over evidence I believe it’s about recognizing that most of the world’s institutions weren’t built with our children in mind. And until they are, parents must build our own epistemologies- very precise, methodical, loving, and fiercely intelligent.
From where I stand, your work isn’t just valid and vital. It’s what real-world adaptive intelligence looks like - the kind that doesn’t wait for peer review to act, but still deserves the world’s respect. Thank you for giving voice to what so many of us live and know to be true.
Splendid article. Thank you.
Interesting thought experiment on autism in the UK.
Most estimate 2 million autistic people in the UK in 2025. That about matches the 68 million pop & 1 in 31 figures quoted by CDC, however we are largely talking about the under 25s.
It also matches anecdotal evidence these days with everyone knowing someone dealing with autism, usually if not directly either a parent friend, work colleague, neighbour etc..
So if 1/3 are severely disabled by autism that’s 666,000 people with severe autism in the UK. The 1/3 severe autism is wrong since the real figure is 46% adding Intellectually Disabled at 8 and those in borderline range together bring it up to over ½ which would be about 1.1 million adults & children in need of full time care & support because they are Autistic inc Intellectually Disabled. There are other disabilities to add on too that impacts those with autism like epilepsy , memory problems which is why only about 16% are in employment.
That leaves probably 1.6 million disabled autistic people in the UK probably on DLA benefit, which matches the 1 in 10 both adult & child is disabled figures by UK gov.
But lets pretend for a moment the 1/3 or 666,000 is accurate, which means if autism hasn’t grown as authorities say and they were the same as 1985 allowing for 25% population increase there should have been approx. 500,000 in the UK with severe autism then.
But no one remembers ever seeing anyone who was non-verbal, toe walking, stimming & deeply intellectually disabled. Old teachers don’t remember them, 50 year olds never had a friend at school who`s brother or sister was dealing with that, 80 year old women who picked their kids up at the school gates in the 60/70& 80s don’t remember either.
Critics say its because they were locked up and hidden from society.
So they are saying the UK locked up 500,000 kids up and nobody knew anything.
The Uk prison population in 1985 was 46,278
The Uk army in 1985 was approx. 153,000
So what would they have needed to lock up 500,000, the doctors, the nurses, the staff, the cleaners, the cooks. They would have been huge ominous buildings where huge numbers of kids were known to be kept, but no one said anything.
And they call us conspiracy theorist’s
I agree Mike - this is a good way to think about it. We know there weren't the same numbers when we were growing up. We also know that the people coming out as autistic in adulthood - and are being encouraged to do so - may have problems but nothing like the severity faced by our children. There is no way anyone could miss the obvious disabilities in my son. What's more, he was in mainstream and then special schools for years are couldn't learn to read or write. You can't 'mask' that. If we keep pushing vaccines I fear the numbers will keep rising further and the costs (social and economic) are already too great to bear. The weird thing is that the people in charge are so complacent and willfully ignoring the whole thing, blathering on about neurodiversity.