Most of what you can read on the internet regarding autism is parents writing about their young children, or alternatively middle-aged Aspies with their very diverging views (either self treating on Reddit/Longcity, or campaigning for no treatment at all, for anyone).
I don’t delve into Facebook and its often closed groups, that some people now want banned. Google has closed Google+, which did carry this blog.
Since teenagers and adults also have autism, you might expect them also to be a common topic. They are not.
Did the parents just run out of energy? Most likely the case.
Autism blogs do seem to just stop abruptly, rather than fade away gradually.
Hope springs eternalThe reason put forward for the mass use of ABA, but almost exclusively only in North America, is that parents really want to do “something”. ABA is "evidence-based", expensive, time-consuming and often you have to fight for it, so it ticks all the boxes.
As Agnieszka pointed out, it is shocking that all this ABA is based on much-quoted research that is well known to be fundamentally flawed.
But parents of toddlers want hope. Don't spoil it for them.
Over the next 10 to 15 years of parenthood, parents will adapt and get used to their new normal.
Along comes the next generation of parents and the story repeats. You would hope that things are getting better, but did anyone bother to check? By constantly broadening the clinical definition of autism since 1980, it is easy to paint a rosy picture that may be far from the reality.
It would be great to hear the experiences of parents of adult children, diagnosed with autism when they were 3 years old in the 1980s and 1990s, particularly of those living in parts of the US where autism interventions were advanced (California, New England etc). Was ABA effective? What happened at school? What happened at the dentist? What about tying shoe laces, riding a bike - was it ever mastered? Who learnt to drive? Who got a job? What about supported/sheltered employment? Who lives independently? Who lives in an institution? Who lives with parents? Dare I ask it, but what percentage are still alive?
It would be great to hear the experiences of parents of adult children, diagnosed with autism when they were 3 years old in the 1980s and 1990s, particularly of those living in parts of the US where autism interventions were advanced (California, New England etc). Was ABA effective? What happened at school? What happened at the dentist? What about tying shoe laces, riding a bike - was it ever mastered? Who learnt to drive? Who got a job? What about supported/sheltered employment? Who lives independently? Who lives in an institution? Who lives with parents? Dare I ask it, but what percentage are still alive?
Severe autism continues to be seen as the childhood condition it genuinely was until the 1970s, when big State Mental Hospitals gradually stopped being the repository for young children with autistic behaviors. People entered as a child and never left. You could only encounter very young children with severe autism (then officially called childhood schizophrenia), unless you worked in one of these institutions, where older children and any surviving adults remained. In modern times adults with autism are again nearly always Aspies, the severely affected have again been hidden away.
In the 1970s physicians still had to apply DSM2, published in 1968, where there was still no autism category, it was considered childhood schizophrenia.
Autism first appeared as a diagnosis in 1980 in the first version of DSM3, you needed to satisfy all six points:
A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.
Outcomes in severe autism often are not good
It is much better to see things as they really are, from day one, not to have false expectations and realize that, while much is possible, it is up to you to make things happen, otherwise the result will not be pretty.
But, people do not want to hear sad stories, however real they are.
They want to read uplifting stories like the New York Times best-seller, "The Reason I Jump". This book is claimed to have been written by a young non-verbal Japanese boy, by pointing at letters on an alphabet chart. Many people, like Dr Siegel in California, believe it was really his mother’s work.You can choose whichever version you prefer.
The Japanese handwriting system is extremely complex, with tens of thousands of characters, but all Japanese also learn Romanized Japanese which is used for computer inputs.
It would clearly be possible to establish if the author was Naoki Higashida, or his mother; most people would prefer to believe it was Naoki.
If today he writes his subsequent books alone in a room with his computer, or indeed a pad of paper, we would have the answer. If Mum/Mom has to be present in the room, I would have my doubts.
Ten years ago I used to buy ABA books and resources from a company in New York set up by an Autism Mom, who had struggled to locate the resources her adopted daughter with autism had needed. It still is a great one-stop-shop and the Mom is still a big believer in ABA, but her daughter went from living at home to a group care home, not the result she or her eager Lovaas-evidence-based new customers were/are hoping for.
The Mom does say that thousands of her customers have kids who were eventually "mainstreamed", but what does that tell you? I used to think that only quite functional kids were mainstreamed and only severely affected kids got special schools. In reality you have kids who cannot use the toilet mainstreamed and some very smart kids with Asperger's who have their own school. Whether a child is mainstreamed or in a special school depends mainly on what the parents want and where they live; the child's severity of autism has remarkably little to do with it.
Our last ABA consultant told us that Monty, the client she sees the least, is the one who improved the most. That is of course a nice thing, but I wanted much more for Monty. Put another way, ABA was good and remains good, but it is not enough.
Lovaas grossly exaggerated the improvement that is likely in severe autism (DSM3 autism/SDA). He excluded data from non-responders in his published results. This approach evidently continues to this day in some other autism studies I have read.
Kids with mild autism do not need intensive ABA with picture cards, it would be a huge waste of time and money. ABA principles can be applied to teaching emotions, empathy and other social skills to young Aspies.
Where do children with severe autism end up?
With all that Lovaas ABA behind them, these children were supposed to have become fully functional adults. Invest $200,000 in ABA in early childhood to save millions in future care costs; that still is the mantra in 2019.
Unfortunately, even after all this expense in childhood the end result still most often requires very expensive lifelong care provision, or the adult just stays at home with his aging parents.
Ten years ago I used to buy ABA books and resources from a company in New York set up by an Autism Mom, who had struggled to locate the resources her adopted daughter with autism had needed. It still is a great one-stop-shop and the Mom is still a big believer in ABA, but her daughter went from living at home to a group care home, not the result she or her eager Lovaas-evidence-based new customers were/are hoping for.
The Mom does say that thousands of her customers have kids who were eventually "mainstreamed", but what does that tell you? I used to think that only quite functional kids were mainstreamed and only severely affected kids got special schools. In reality you have kids who cannot use the toilet mainstreamed and some very smart kids with Asperger's who have their own school. Whether a child is mainstreamed or in a special school depends mainly on what the parents want and where they live; the child's severity of autism has remarkably little to do with it.
Our last ABA consultant told us that Monty, the client she sees the least, is the one who improved the most. That is of course a nice thing, but I wanted much more for Monty. Put another way, ABA was good and remains good, but it is not enough.
Lovaas grossly exaggerated the improvement that is likely in severe autism (DSM3 autism/SDA). He excluded data from non-responders in his published results. This approach evidently continues to this day in some other autism studies I have read.
Kids with mild autism do not need intensive ABA with picture cards, it would be a huge waste of time and money. ABA principles can be applied to teaching emotions, empathy and other social skills to young Aspies.
Where do children with severe autism end up?
With all that Lovaas ABA behind them, these children were supposed to have become fully functional adults. Invest $200,000 in ABA in early childhood to save millions in future care costs; that still is the mantra in 2019.
Unfortunately, even after all this expense in childhood the end result still most often requires very expensive lifelong care provision, or the adult just stays at home with his aging parents.
Having closed the big State Mental Hospitals in almost all countries, there is often nowhere for many people to go. Some rich countries have some provision to live in supervised care homes or treatment centres; in the UK these are reported to be sometimes worse than the old State Mental Hospitals. Personally, I would reopen a limited number of State Mental Hospitals, much better than having mentally ill people living on the streets.
It is time to recognize that you need more than early intervention, or lifelong ABA therapy, you need to treat the underlying biology. Ideally you would combine personalized medicine with early intervention.
It is time to recognize that you need more than early intervention, or lifelong ABA therapy, you need to treat the underlying biology. Ideally you would combine personalized medicine with early intervention.
“Dad … Where’s the Shaving Foam?”
An important take away point from Dr Siegel’s recent book (The Politics of Austism), that is not contentious, is that children with autism are often taught the “wrong things” during their 15+ years of education. Much time is wasted learning academic skills that are never mastered and not even useful, while basic life skills are neglected. Neglecting life skills is very easily done and this is why every family needs to have some outside input to their autism program.
Monty’s assistant at school in the mornings is currently teaching a group of older teenagers with autism how to tie their shoe laces. This is a skill that you really do need to eventually learn; if not at 16 then when? Typical kids master tying show laces by the time they are about 5 years old.
I still get asked who brushes Monty’s teeth and who ties his laces. He is 15 years old now, he does.
Recently, I was asked who shaves Monty. He shaves himself, as I was reminded this morning when I heard a shout of:
“Dad … Where’s the Shaving Foam?”
A year ago that could only have been big brother, but now it is little brother himself.
Headphones
The stereotypical image for a boy with autism often seems to include fancy noise cancelling headphones or just ear defenders, now specially made for little heads.
Getting used to loud noises is just like getting used to tying shoe laces. It is a skill you need to practise and eventually you will likely master it.
We recently visited the noisy waiting room at a paediatric dental clinic and the two very nice dentists we came to meet immediately asked if Monty would prefer to wait outside, away from the noise. I said that years ago we might have needed that, but now it is not a problem, even screaming babies can be tolerated.I recently bought a new vacuum cleaner and this prompted our cleaning lady to recall how Monty used to hate her vacuuming and she had to do it when he was not at home.
Monty has learned to accept noise by being exposed to it. We did not hide him from noise, although the cleaning lady did. He does have sound sensitivity like many people with autism, but he has learnt to control it.
In a recent post I mentioned Monty’s new job washing cars.
He insisted at the weekend that he would clean the interior of my car, having already again cleaned the exterior.
“Dad’s car is a mess”
This translates to “now I want to clean the interior”.
Having carried the new vacuum cleaner to the garage, Monty turned to me and said -
“The vacuum cleaner will be very noisy”
Yes, but we don’t even think of walking over to where my power tools are kept and pick up the ear defenders. Noise is a part of life.
Autism friendly cinemas, theatres, even shopping
In developed countries there all kinds of adaptations being made to help people with autism. That is nice, but ultimately people with autism have to adapt to the world.
Testing limits and moving boundaries
We all have our limits and our comfort zone. Growing up typical people test their own limits and stretch their boundaries. This is one great benefit of sport, either team sport or individual pursuits.
Young children with severe autism have a very narrow comfort zone and will let you know the second you take them out of it. The natural caring reaction of parents ends up reinforcing these restricted boundaries.
Typical children are (sometimes literally) thrown in at the deep end and have to sink or swim, hopefully swim. This goes on through adolescence and the final result is a well rounded successful adult.
If you are allowed to stretch your boundaries, make failures, fall on your face only to get up and continue, you will achieve your potential. Just think about typical people you met growing up, or now see growing up, overly protective parents do not do their typical kids any good.
When you are an autistic child, with all the issues that brings, you start with very tight boundaries and a big effort is needed to widen them to engage with the world. If the boundaries are further reinforced by the upbringing, the child is losing their chance to engage with the world.
These issues all apply to typical adolescents. They usually figure things out for themselves, but a lot does seem to depend on their peer group.
At the moment I am moving Monty's boundaries to accept a lengthy dental intervention by a very nice dentist. I am also trying to move the dentist's boundaries of what is possible, so she is not worrying too much about what might not be possible. We have found a good plan B, for what to do if it is not possible to complete the job with just local anesthetic.
In most of the world dentists are no longer allowed to give general anesthetic (GA), or even I/V sedation, unless they are within a hospital. This is because years ago too many serious accidents happened at the dentist. Ten years ago, the last time Monty has real dental work, it was under general anesthetic (GA) at a private dental clinical in a neighboring country, where they brought in an anesthesiologist just for him. When I was a child in the UK, there were one million general anesthetics administered by local dentists every year, this fell to 300,000 in the mid 90s and just 57,000 in 2000. In 2002 local dentists were banned from giving general anesthetic. From then on you had to do to your local acute hospital. The result may be less convenient, but people no longer die at the local dentist from mistakes with general anesthetic.
It looks like US dentists still make extensive use of sedation, I do not know about general anesthetic (GA). One common sedative used by dentists is intravenous Valium. That would not be a good idea in someone with bumetanide-responsive autism.
Our local University hospital offers dental work under GA, but you may need to wait 2 months for an appointment and they only do "radical" procedures, meaning they just pull out teeth. They offered to make an appointment to extract Monty's tooth that I want to repair. Our plan B is a small local private hospital that also does some dentistry and offers general anesthetic. This is an option most local people were unaware of and is much cheaper than going abroad.
Having a plan B, means that proceeding with plan A is less scary for all concerned. It is also scary for the dentist, which you might not have considered, but I think it is the reason that many dentists would not even try and treat a child with more severe autism.
I did discover 10 years ago a training program for dentists called D-Termined. It is available on DVD and the originator, Dr Tesini, now has a study to show its effectiveness. Back then I could not find any dentist interested to learn how to treat difficult patients without general anesthetic.
The DVD used to be free, it has been updated but only the second part seems to be available to view online. Click the link below.
Familiarization and sequential tasking in Dentistry for patients with autism
The study is below.
Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder
In essence, it is step by step dentistry aimed at making children eventually treatable by a regular dentist, who has had no training. It is ABA applied to the dentist. You do need numerous visits to the dentist, getting comfortable with all the individual steps needed to complete a dental procedure.
Monty's new dentist is actually doing this, but based on applying her common sense. She seems most worried about the local anesthetic causing a bad behavioral reaction. When you lose feeling in your mouth/jaw some people with autism can react very badly and then the dentist has to stop and take cover. That is why you need a Plan B. I thought the injection and the drilling would be the problem.
We have now completed our first procedure that included local anesthetic, a fair amount of drilling and then filling. Strangely enough Monty enjoyed it; who else would have fun at the dentist?
Hopefully the rest of the work will go as smoothly.
P.S.
Where's the toothpaste?
This stopped being a question a few years ago, when Monty figured out what to do when he could not squeeze out any more toothpaste. Go find a new one!
Testing limits and moving boundaries
We all have our limits and our comfort zone. Growing up typical people test their own limits and stretch their boundaries. This is one great benefit of sport, either team sport or individual pursuits.
Young children with severe autism have a very narrow comfort zone and will let you know the second you take them out of it. The natural caring reaction of parents ends up reinforcing these restricted boundaries.
Typical children are (sometimes literally) thrown in at the deep end and have to sink or swim, hopefully swim. This goes on through adolescence and the final result is a well rounded successful adult.
If you are allowed to stretch your boundaries, make failures, fall on your face only to get up and continue, you will achieve your potential. Just think about typical people you met growing up, or now see growing up, overly protective parents do not do their typical kids any good.
When you are an autistic child, with all the issues that brings, you start with very tight boundaries and a big effort is needed to widen them to engage with the world. If the boundaries are further reinforced by the upbringing, the child is losing their chance to engage with the world.
These issues all apply to typical adolescents. They usually figure things out for themselves, but a lot does seem to depend on their peer group.
At the moment I am moving Monty's boundaries to accept a lengthy dental intervention by a very nice dentist. I am also trying to move the dentist's boundaries of what is possible, so she is not worrying too much about what might not be possible. We have found a good plan B, for what to do if it is not possible to complete the job with just local anesthetic.
In most of the world dentists are no longer allowed to give general anesthetic (GA), or even I/V sedation, unless they are within a hospital. This is because years ago too many serious accidents happened at the dentist. Ten years ago, the last time Monty has real dental work, it was under general anesthetic (GA) at a private dental clinical in a neighboring country, where they brought in an anesthesiologist just for him. When I was a child in the UK, there were one million general anesthetics administered by local dentists every year, this fell to 300,000 in the mid 90s and just 57,000 in 2000. In 2002 local dentists were banned from giving general anesthetic. From then on you had to do to your local acute hospital. The result may be less convenient, but people no longer die at the local dentist from mistakes with general anesthetic.
It looks like US dentists still make extensive use of sedation, I do not know about general anesthetic (GA). One common sedative used by dentists is intravenous Valium. That would not be a good idea in someone with bumetanide-responsive autism.
Our local University hospital offers dental work under GA, but you may need to wait 2 months for an appointment and they only do "radical" procedures, meaning they just pull out teeth. They offered to make an appointment to extract Monty's tooth that I want to repair. Our plan B is a small local private hospital that also does some dentistry and offers general anesthetic. This is an option most local people were unaware of and is much cheaper than going abroad.
Having a plan B, means that proceeding with plan A is less scary for all concerned. It is also scary for the dentist, which you might not have considered, but I think it is the reason that many dentists would not even try and treat a child with more severe autism.
I did discover 10 years ago a training program for dentists called D-Termined. It is available on DVD and the originator, Dr Tesini, now has a study to show its effectiveness. Back then I could not find any dentist interested to learn how to treat difficult patients without general anesthetic.
The DVD used to be free, it has been updated but only the second part seems to be available to view online. Click the link below.
Familiarization and sequential tasking in Dentistry for patients with autism
The study is below.
Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder
In essence, it is step by step dentistry aimed at making children eventually treatable by a regular dentist, who has had no training. It is ABA applied to the dentist. You do need numerous visits to the dentist, getting comfortable with all the individual steps needed to complete a dental procedure.
Monty's new dentist is actually doing this, but based on applying her common sense. She seems most worried about the local anesthetic causing a bad behavioral reaction. When you lose feeling in your mouth/jaw some people with autism can react very badly and then the dentist has to stop and take cover. That is why you need a Plan B. I thought the injection and the drilling would be the problem.
We have now completed our first procedure that included local anesthetic, a fair amount of drilling and then filling. Strangely enough Monty enjoyed it; who else would have fun at the dentist?
Hopefully the rest of the work will go as smoothly.
P.S.
Where's the toothpaste?
This stopped being a question a few years ago, when Monty figured out what to do when he could not squeeze out any more toothpaste. Go find a new one!
Well some very shocking news on America's front with regards to the increasing trend of corporate entities such as Amazon acting as de-facto gatekeepers in censoring speech or entire topics they don't like:
ReplyDeletehttps://www.nytimes.com/2019/03/13/technology/amazon-autism-books.html
Now, there is a plethora of books and blogs by people writing about autism treatments and other ideas that I disagree with, but I think censoring that material, especially material regarding vaccines is not just a bad idea but an immoral one as well. On top of that, even though I don't believe vaccines are what are driving the increased rate of autism diagnosis in the last several decades, censoring the opinions of others with a view contrarian to mine only makes them look like victims, as well as immediately making complicated discussions about topics with shared objectives into an us versus them affair where the only objective is to lie about your opponent as much as possible so as to relatively discredit them and their ideas, even if that means making yourself look like a fool in the process. In this scenario, it does not matter if 80% of everyone else thinks both sides are terrible if the voices of the other side are silenced and the other 80% are too fearful for even calling out the bad behavior of the extremists.
There is a lot of stuff Peter may have in his upcoming book that is far out of the mainstream (i.e. not approved by the American medical clergy of doctors, psychologists, and psychiatrists), and if Peter's book was banned by Amazon, I would not be surprised in the least bit if that were to happen by the way things are going in my country, especially in regards to corporatized power with amoral virtue-signalling executives ironically deciding what "speech" their customers need to be protected from.
Also, as Walmart, and later Amazon have almost all on their own driven the diversity of retail operators to a handful of major players, individuals or small businesses looking to sell their products have very poor bargaining power now in promoting their products, or in this case books, short of just trying to sell their wares on their own website and then being practically forced to advertise through the big tech monopolies (including Amazon) anyways. This means if you have anything controversial that some individual or group at Amazon does not like something you have to say, you can have your content censored for official or unofficial reasons at any time with no alternative recourse to promote your wares. Even if the majority of people disagree with what you have to say, you should still have equal access to say what you want in a so-called "free society".
Tyler, there probably are plenty of people who do not like this blog. I very much doubt they have read any of the 5,000+ papers that are referred to, but they do not like the idea of some people breaking ranks with cookie-cutter medicine; they are not aware that some doctors are already doing this for their own kids.
DeleteOne one occasion I did lose access to my blog, presumably because somebody complained to Google. You just click on a box to refer the case to a human arbiter.
I do occasionally download a back-up copy of this blog, in case one day it disappears.
I love when you write about the everyday challenges of autism and how parents personality is a huge factor in what kids with autism end up with/like. I am the ‘bad cop’ in our family, always stretching my kids boundaries. She always catches up about 6 months after I start out on a topic, to my happiness and frustration at the same time. This pushing has resulted in 0 dislike towards me, and a lot of self esteem. But I also provide safe havens - we have never done anything uncomfortable or pushing in her own room, she does have noise cancelling headphones for flights and shoppping center visits (to be honest i use them too), if we are in the midst of a challenge and I ask her to sit on my lap, she knows that for the duration of this hug, there will be no tasks or demands.
ReplyDeleteA lot of life with autism is a practical issue - I am blessed with my child having perfectly healthy teeth, probably like her father who is 40 without any dental work done EVER, with a very basic attitude towards oral hygiene, and I thank the powers that be every day for it - my own semiautistic self managed to have a dental appointment for the first time aged 12, since all previous appointments were contact sports matches between me and the dentists. The system was exclusively state organized back then, and at one point the local dentists simply all knew about me and did not want to see me. The first dentist who talked to me and went at my pace was the first one that did work.
The censoring and law changes in the US happening now are so totalitarian, it might be from a movie. It scares the s*** out of me to be honest, completely unrelated to the fact that it concerns autism. Of all the amazing qualities that you have, Peter, your naivity astounds me - would you be willing to make such grave decision without reading at least 50 papers, if not 5000? Probably not. A lot of people are - they subscribe to virtue signaling and group mentality, which are more comfortable than actual truth. That is a personal, moral choice, and not some sort of coincidence.
Hi Peter
ReplyDeleteSlightly off topic, now that Dr Chez has moved to stem cell therapy, have you done any research in that area?
https://www.cryo-cell.com/treatments-and-research/autism
Regards
Deepak
I suggest you watch this TED talk
Deletehttps://www.ted.com/talks/jocelyne_bloch_the_brain_may_be_able_to_repair_itself_with_help
Peter, would you do stem cells for you son - his own?
DeleteI think Dr Bloch is going in the right direction and when she finally starts her human trials I will be interested in the results. I think there will be a lot of expensive quack therapies in the meantime.
DeleteSo I do not expect my son to be using this kind of therapy for many years.
I don't think having kept your own stem cells will be necessary.
I mean the process where they take your own from the hip bone and then put it back in, which is (along with 1. own cord blood or 2.commercial cord blood products) available now for autism.
DeleteTatjana, there actually is a recent review study of the completed trials in autism.
Deletehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6204871/
I actually think what Dr Bloch is doing is much more advanced and likely to benefit cases of brain damage.
If you look at the TED talk at 8.36 minutes you see how her therapy dramatically improves cognitive function (in a monkey).
Peter, Antonucci is my kids doctor, and I correspond with Siniscalco as well. To quote Antonucci when I told him I pulled my kid from the Duke stem cell study, ‘Go back on your knees and beg them to take her back’. We are going to Duke in a few weeks time but in a commercial program - you pay and get the same cord blood infusion, just without any of the study stuff. At this time, while I believe and use so many things for her which have brought her to where she is, my next thing is definitely stem cells - not just the one treatment but more. I know that there is in Novi Sad also a commercial program with hip bone extraction which has a study on immunological factors (before and after) with the Military Medical Academy, and there are also further developmenta which I cant elaborate yet on. I agree that dr Blochs treatment would probably be best, for the brain, but you and I both know that autism resides at least also, but perhaps completely, outside of the brain. This is of course anecdotal evidence, but the dramatic improvements of many kids with stem cells are incredible. I hope for the same for my kid.
ReplyDeleteTatjana, I think it is great that research is progressing to clinical trials and I will certainly be reading the results with an open mind.
DeleteI think it does depend what these stem cells are supposed to do.
Somewhere in this blog I referred to the research where they take a sample of skin and via a complex process grow a part of the brain, or even a so-called mini-brain. This serves like a biopsy of the living person. Then the researcher can examine this as if it was a sample of that person's brain. The point here is that the DNA in those stem cells makes them reproduce the defect that is found in the brain of the human donor of the skin cell.
In Dr Bloch's case she is taking a healthy monkey, damaging its brain and then encouraging the brain to repair itself. If the monkey had a fault in its DNA it would replicate the error.
It may be you need to modify the DNA in the stem cells.
I doubt there will be a one size fits all therapy for stem cells.
I know the problem and Duke is currently testing if an unaffected siblings cord blood yields better results. The discussion however only has merit if we discount 2 options: 1. autism is not genetic or 2. cord blood contains more than stem cells. I will be able to tell you more about this in about 4 months when we count our results from Duke. We have been steady at ATEC 37 for 6 months now so a sudden drop of 10+ points will have a clear source
DeleteGood luck !
DeleteNew paper, very interesting.
ReplyDeleteA very up to date collection of what chemicals (such as pesticides) and drugs (such as valproate) alter genetic signalling and its correlation to autism.
A role for gene-environment interactions in Autism Spectrum Disorder is
suggested by variants in genes regulating exposure to environmental factors
https://www.biorxiv.org/content/biorxiv/early/2019/01/15/520544.full.pdf
Peter -
ReplyDeleteMy son is 18...so this post hits home for our family.
Please, related to your dental comments, we are currently dealing with the removal of his Wisdom Teeth. We have been to 2 different dentists here in the USA and are nervous about the sedation. My son is currently taking Bumetanide (which I learned about from your blog) - and doing quite well with it - so your comments have my interest. Why would valium not be a good idea for a Bumetanide responder? Your thoughts would be appreciated!
Also, while it is a little too early to truly know, my son is responding nicely to the KetoForce / C8 cocktail. Thank you!
Best regards,
Ralph
Ralph, nice to hear from a parent of an adult with autism.
DeleteValium is a Benzodiazepine class of drug. They work at the GABAa receptor to increase the inhibitory effect of the GABA neurotransmitter. When given into your vein, the inhibitory effect is so great that it causes sedation, by stopping your neurons firing.
In people with autism who respond to bumetanide, GABA appears to be excitatory and not inhibitory. As a result, giving a benzodiazepine drug may produce the opposite effect to that intended, instead of increasing the inhibition of neurons to fire you actually over-stimulate them, which will be seen as violent aggression. Valium is widely known to cause paradoxical (opposite) effects in some people, but little thought was given as to why.
You can even read news reports of adults with autism going crazy after taking Valium and the elderly parents calling the police for help. I then think “there goes another undiagnosed bumetanide responder”.
Keep us informed about KF/C8 and how you solve the dental work.
Peter,
ReplyDeleteRegarding pro inflammatory cytokines in ASD are there trials using immunosuppressant s?
The are trials in drugs that modulate the immune system (NSAIDs, statin etc) there is a probiotic trial (LGG-BB12) underway.
DeleteSuppressing the immune system is not a good long term therapy, but steroids are discussed here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4022409/
I think effective immunomodulatory therapy will have to be precision medicine, selected for the specific person. In some people a repurposed antibiotic might be best, like azithromycin. You would need a well read doctor.