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Thursday 10 May 2018

Accept Autism or Treat It?


Back in the old days autism was a hidden condition and those affected were usually tucked away in institutions. A trend then slowly developed towards inclusion, with the Individuals with Disabilities Education Act (IDEA) being passed in 1975 in the US.  Other countries have slowly moved in this direction, with France only this year finally following suit.



Having moved on from hiding autism, we then had the new diagnosis of Asperger’s appearing in the 1990s and so autism became a much broader diagnosis. Then followed the idea of awareness and diagnosing adults.
Now we have an ever-growing number of people diagnosed with this “autism” thing, that other people are supposed to be aware of. Is it a disease, a dysfunction, a disability or just a difference?
Most importantly are you supposed to treat it, or just accept it?
I recently watched a BBC documentary where a doctor was the presenter and she was talking about schizophrenia. She said that at medical school she was taught that there are medical problems and there are mental health problems, for some reason she was taught that mental health problems are not just medical problems of the brain. Somehow mental health problems are supposed to be different and not based in biology, where did that idea come from?
The program went on to show that about 8% of schizophrenia appears to be caused by NMDAR antibodies. This is a condition where antibodies attack NMDA receptors in the brain, this causes hallucinations and other symptoms that a psychiatrist would diagnose as schizophrenia.  Rather than treating lifelong with anti-psychotics, the patient needs immunotherapy and can then resume a normal life.
It looks like 30% of modern autism is associated with cognitive impairment leading to a measured IQ of less than 70. This is intellectual disability (ID) to autism parents and mental retardation (MR) to the rest of the world.
The interesting finding in this blog is that some MR/ID is actually treatable. I did suggest to the Bumetanide researchers that they should include measuring IQ in their clinical trials.
I do not see how anyone could object to treating MR/ID, even those parents with Asperger’s who find the idea of treating their child’s severe autism to be repulsive.

Maths, Autism and Hans Asperger
Some people with Asperger’s are brilliant at maths, and I think these are the ones that Hans Asperger was mostly studying in Vienna in the 1940s. Lorna Wing came along in 1981 and then Uta Frith in 1991 and translated into English one of Asperger’s 300 papers, the 1943/4 “Die Autistischen Psychopathen im Kindesalter” and then named autism with no speech delay as Asperger’s Syndrome.
In 1994 the Americans adopted Asperger’s as a diagnosis and then rejected it two decades later in 2013 (DSM5).
In Asperger’s 1943 paper he described Fritz, Harro, Ernst and Hellmuth, who he termed "autistic psychopaths”; all four had high IQs and Asperger called them "little professors" because they could talk about the area of ​​their special interest in detail and often accumulated amazing knowledge.
I think Asperger’s should have been left as the "Little Professor’s Syndrome" (high IQ only).
In 2018 some people have realized that from the mid 1930’s almost all people in high positions in Austria and Germany were implicated in some pretty evil Nazi programs, including killing mentally disabled children. Asperger, being a senior psychiatrist at the University of Vienna, obviously played a role, not wanting to pay a visit to the local Gestapo basement.  He was living in a police state, where people tend to do what they are told.  Unlike most of the University medical faculty he was not a member of the Nazi party.
The particularly evil Austrian psychiatrist was Dr Emil Gelny, who modified an ECT (Electro Convulsive Therapy) device to give his subjects lethal shocks. Having personally killed hundreds of mental patients, after the end of the war he escaped to Baghdad, continued practising as a doctor and lived till he was 71. He was never brought to account and Mossad clearly never paid a visit, so I guess there were no Jewish victims.  His highly publicized use of ECT is one reason why it is little used today, even though it does seem to help certain otherwise untreatable conditions.
What surprised me was that in 1930 (before the rise of Hitler) half of the doctors in Vienna were Jewish and indeed half of the Vienna medical faculty were Jewish. So not so anti-Semitic in 1930.  All these doctors had to leave and so the young Hans Asperger made rapid career progress.
Things were not all rosy elsewhere.
I recently read that in London in the 1950s Jewish doctors struggled to progress within the faculty of medical schools and so some emigrated to the US.
We should also note that the Nazis took their inspiration for eugenics from America, where it backed by well-known names such as the Carnegie Institution and the Rockefeller Foundation. California, which we now might consider very liberal, was the centre for forced sterilization.  Between 1907 and 1963 over 64,000 individuals were forcibly sterilized under eugenic legislation in the United States.
So, I think Asperger deserves a break, he was likely no better or worse than other Austrians, unlike most he did not join the Nazi Party. Wing and Frith (a German) were naïve to name a psychiatric syndrome based on the work of an Austrian written during the Nazi period. I think you would not name a reservation for native Americans after General George Custer. 

Back to Maths
One group of kids with severe autism do have near/distant relatives who have remarkable maths skills but were never diagnosed with anything other than being a bit odd.
Monty, now aged 14 with ASD, had great difficulty with even the most basic maths until the age of 9, so much so that we did not bother to teach it, we focused on literacy.
Five and a half years of drug treatment has produced a boy who is now great at maths, at least in his class of 12 years olds.
Coordinates, no problem; negative numbers, no problem. It still now shocks those who knew him from before.
Today I received a message from Monty’s assistant at school and a photo of his classwork, where he is solving simple equations like
7x - 6 = 15
That is not a complex problem for a typical boy, but at the age of 9, after 5 years of intensive ABA therapy, we were still challenged by the most basic single digit addition.  


Nice neat handwriting


Should you treat autism? 

Pretty obviously I think autism should be treated. I would favour treating all types of genuine disease.
If you can treat it, I’d definitely call it a disease.
I would treat people with Down Syndrome to raise their IQs to improve their quality of life and I would also treat them preventatively to avoid early onset Alzheimer’s, which they are highly likely to develop. By the age of just 40 years old, studies have shown significant levels of amyloid plaques and tau tangles, which will lead to Alzheimer’s type dementia.
If you cannot treat it, then you’re just going to have to accept it.
But how would you know you cannot treat it, if you do not at least try?
Since there are hundreds of types of autism, there is no one-stop treatment shop for autism. For medical advice you should go to see a doctor, but mainstream medicine believes autism is untreatable. Today it is really up to the parents themselves to figure out what, if anything, to do.  Dr Frye might suggest you try Leucovorin, B12 and NAC; some DAN doctor will tell you it is all about candida; another will treat everyone with cod liver oil; another will blame parasites; most will blame vaccines.  One lady will charge you large amounts of money for her genetic tests, baffle you with complicated looking charts and then sell you her supplements by the bucket-load. This blog suggests numerous therapies may be partially effective in specific people, a case for personalized medicine.  My Polypill is what works for my son's autism; it is nice to know it works for some others, but it does not work for all autism, that would never be possible.  
With schizophrenia, you could start by treating that 8% with NMDAR antibodies via a science-based medical therapy; this has got to be a big step forward over psychiatric drugs.
We have gone from aged 9, struggling with: -
5 + 2 =  ?
To aged 14, solving worded maths questions, where you have to create the formula and to neatly solving simple equations like:

7x – 6  =  15                  
In algebra there is no doubt effective treatment wins over acceptance.

There is more to life than algebra, but it looks pretty clear that going through life with an IQ 30+ points less than your potential is a missed opportunity. 

Trivial autism
Many people with mild autism and an IQ much greater than 70 are happy the way they are and do not want treatment. For them autism is not a disability, it is just a difference, so we might call it trivial autism.  Unless years later they commit suicide or hurt other people, then it was not so trivial after all.
Unfortunately, some people with trivial autism will go on to produce children with not so trivial autism.
Then you end up with situation that the adult can block what is in the child’s interest, just like deaf parents who refuse their deaf child to have cochlear implants to gain some sense of hearing. Cochlear implants are only effective when implanted in very young children, so by the time you are old enough to have you own say in the decision, it is too late.  Some deaf parents do not want hearing children – odd but true.
So, I come back to my earlier point better to treat ID/MR, don’t even call it treating autism.
How can the Asperger’s mother then refuse treatment to her son with autism plus MR/ID? She can still be able to celebrate her difference, while he gets a chance to learn to tie his own shoe laces, put his shirt on the right way around and do all kinds of other useful things.


So, focus on the 31% of autism? 





                     
Unfortunately, in the research trials they often exclude severe autism, so they exclude people with epilepsy, people with MR/ID and people will self-injurious behaviour (SIB). The very people who clearly need treatment are excluded from the trials to determine what are effective autism treatments. Rather odd.




35 comments:

  1. Shortly after receiving our second and third autism diagnosis the local university which evaluated all four of my children recruited my family for a study employing parental training as an intervention for autism. I went along with the study for a variety of reasons including that there would be free autism therapy for my kids while I got this training. Anyways the first time we showed up they had to evaluate my children and my oldest son could not follow simple instructions or answer simple questions because he was non-verbal, so they kicked us out of the study and sat me down and gave me some speecg about how the kids with the best shot are the ones with the most involved parents just to make me feel better. I left the building quite disappointed and bewildered that much of the autism interventional research I had read so far (this was 5 or so years ago and I knew a lot less then than I do now) was obviously cherry-picked nonsense and therefore largely useless. That day I pretty much stopped accepting that "autism professionals" had any real authority on the matter and realized if my children were to have any shot at life, it would be up to me and only me to get them there by sorting through as much of the great variety of ambiguous research concerning autism and hoping that I could figure out some interventions that actually would improve their chances.

    It is not that I hate all medical professionals or anything like that, it is that there does not seem to be any that are actually real experts on autism when it comes.to the latest research. For example, at my last annual checkup for my oldest son, he was a little more hyper than usual and his pediatrician did not seem to understand that those kind of behaviours are part of what autism is all about even though she has seen him since he was a baby. She is a professional and should be better informed, yet she seemed befuddled and I suppose chalked up his behaviour to poor parenting or my child not eating enough fruits and vegetables. The irony was that he was very good at doing everything else as part of the checkup except waiting around in a small room for 20 minutes. Oh and worst of all, I had to explain to her what SIB was for the hundredth time. Of couse, people can say I should just get another doctor, but this level of ignorance among general care practitioners is the norm here in the USA so my options are limited. The American Medical Association is responsible for certifying doctors, but apparently understanding autism is not an important part of their training so what is a parent to do when those entrusted to help your kids are incompetent.

    Anyways, my oldest son is now 9 years old now so I will be over the moon if he is doing algebra at age 14. Pretty much everyone but myself would assume that will be impossible, yet few people know that he can now read and write now and even spell very well when it comes to typing and writing. He still can't cross the street safely on his own or do many other simple things, and his behaviour would have so-called professionals write him off as a lost cause, but I know he has a strong desire to learn and figure things out on his own, and anyone like that in my book will always have a fighting chance.

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    1. Tyler, crossing the street safely is not a simple task and unlike in algebra you may pay dearly for a mistake. My son can now solve basic algebra but I would not yet let him cross a complex road junction by himself.

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  2. Congrats Peter and Monty! So happy for you. May God bless you. Thank you Peter for sharing this. You give hope to all of us desperate parents and grandparents.

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  3. Roger, it would be interesting to know how the lady from Facebook resolved her mast cell disorder. Can you ask her?

    Also, it is again interesting how completely different biological causes (yours and hers) end up appearing as the same "autism". This just shows how difficult treating someone else's autism is going to be.

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  4. Peter, What would be the differences between Aspergers and HFA ? Where would be the border in your opinion?
    Valentina

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    1. Valentina, these labels do not mean very much. I think Asperger's should be for clever people who had no speech delay, but many people have received this diagnosis who are very weak academically. In countries where there is a stigma to the word "autism" I think you will find more Aspergers.

      If you had a speech delay but progressed well you might be HFA, but this really just means mild autism.

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  5. Peter: what is the 5.5 years of drug treatment you have quoted in the article ? Is it Bumetanide or other drugs ? Can i know which helped your son most ? I have a non verbal son as well and planning to try bumetanide.

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    1. Bumetanide was the first drug we started in December 2012. Several trials were made stopping the treatment to check it still has an effect. It is the most potent treatment in our case. In some people they achieve a similar profound effect from low dose clonazepam, these are mainly children of doctors.

      The only recent addition is Agmatine. NAC makes stereotypy go away. Our season SIB is controlled by verapamil plus allergy treatments.

      Atorvastatin improves cognition in a different way to bumetanide. Bumetanide created awareness of the world whereas Atorvastatin produced initiative so he would do things unprompted. The addition of low dose Clonazepam does have an incremental effect on cognition. but not as big as the initial gain you produce from bumetanide.

      NAC and atorvastatin have been used for five years.

      The effect of broccoli/sulforaphane was significant at the start but after a few years it now has no effect. This may be because the epigenetic effect has produced a permanent change. This has been documented in the research.

      Potassium bromide is just producing more chloride lowering effect like bumetanide inside neurons, but it causes some acne. This is why its use for human epilepsy is now limited to German speaking countries.

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  6. Peter, What dose of atorvastatin do you use? Here I can find calcic atorvastatin, is it ok?
    Valentina

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    1. Valentina, it is the same drug. I use 10mg taken in the morning.

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  7. Peter, my son is presenting rolling eyes, the famous upgaze, I suspect absence seizures, i don't want to return to valproate,his cognition is much better now and don't want to keep affecting mitochondria.What could i try?
    Valentina

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    1. Valentina, ask your neurologist about ethosuximide (Zarontin). This is the other common therapy for absence seizures. This might have less side effects than valproate.

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    2. Thanks Peter, I can get Zarontin from Pfizer,he is weaking up many times at night.
      Valentina

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  8. Perhaps not very new information, but still, one step closer to find the right interventions for the right autism:
    "S-adenosyl methionine prevents ASD like behaviors triggered by early postnatal valproic acid exposure in very young mice" (2018)

    https://www.sciencedirect.com/science/article/pii/S089203621730154X

    /Ling

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  9. Here is another interesting fiber study on immune activation when challenged by a flu virus (in mice):

    Press Release:

    https://www.sciencedaily.com/releases/2018/05/180515113805.htm

    Paper:

    https://www.cell.com/immunity/fulltext/S1074-7613(18)30191-2?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1074761318301912%3Fshowall%3Dtrue

    What is most interesting is that a high-fiber diet (inulin) selectively dampened excessive innate immune activation in the lungs (which can harm a lot of tissue), while enhancing adaptive immunity by boosting CD8 T cells.

    The experiments did not just test fiber, but also short-chain fatty acids directly in the form of sodium butyrate supplementation, so it appears from the results that either supplementing fiber or sodium butyrate may achieve similar outcomes with respect to immune regulation.

    I still see parents talking about all of the restrictive things they do with regards to food in the hopes of dealing with gastrointestinal health, but in the process totally neglect soluble fiber intake which is probably going to be pretty low on a restricted diet. If parents are worried about supplementing various resistant starches to the diet of their child because of some odd idea like it promoting candida overgrowth or something like that, they should at least be able to just use sodium butyrate even though I firmly believe supplementing dietary fiber is a better route (doing both fiber and sodium butyrate within certain parameters might be an idea to pursue as well).

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    1. Tyler, inulin, sodium butyrate and probiotic bacteria that produce butyric acid are indeed very interesting. Given they have already been adopted into animal feed, it is odd that humans have not followed suit.

      It must depend on how much butyric acid you start with. When I trialed sodium butyrate and inulin, there was no obvious effect. But I will try inulin again to see if it improves pollen allergy.

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  10. Peter, Zarontin is discontinued,there's no more alternatives.
    Valentina

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    1. It is available in many countries, try in Argentina.

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    2. Peter, do you know about Gaba B antagonists as anti absence seizure drugs and cognitive enhancers?Gaba A agonists like baclofen would worsen this type of seizures.
      Valentina

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    3. Sorry,baclofen is a Gaba B agonist

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    4. Valentina, I would be careful and listen to the neurologist. Finding a nearby country with Zarontin is likely the best option.

      Delete
    5. Ok,thanks,could I use acetazolamide until I get Zarontin in B.A?

      Delete
    6. Valentina, here is a paper that reviews the many options:-

      Current and emerging treatments for absence seizures in young patients
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3716601/

      I don't think anyone can predict which therapy will be the most effective and well tolerated. You have to be careful.

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    7. Peter, between Diamox and Lamotrigine, what would you choose?Diamox can be combined with bumetanide?

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    8. Diamox with bumetanide was an earlier idea of mine, since Diamox acts on the AE3 exchanger and so should further reduce chloride within neurons, but in my son Diamox causes reflux. Some people do use this combination without side effects.

      Lamotrigine is a widely used anti-epileptic drug and may very well help with absence seizures.

      It is all about getting the good effects, without making anything else worse.

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    9. Thanks Peter,I will go with Diamox,he has already use it with no side effects and lamotrigine scares me,by inhibiting glutamate, the dopamine system is removed from the inhibitory influence of glutamate,increasing dopamine levels in striatum and causing stereotipic behavior.
      Valentina

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  11. Picture of the day: "Frustrated mice"

    https://www.researchgate.net/figure/Dopamine-DARPP-32-feedback-in-cAMP-signalling-in-frustration-like-behaviour-The-green_fig1_266327132

    I just found a list of 120+ genes that are dysregulated in my daughter, including 23 ASD genes...

    /Ling

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    1. Ling, that list should help move you in the right direction.

      It looks like bumetanide helps in many types of cognitive loss (fragile X, Downs etc). The latest study in Fragile X showed a disease changing effect of bumetanide, if taken when very young (in mice). ie while the brain is still developing.

      If it was me, I would try bumetanide.

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    2. Yes, I am very thankful that there actually is so much relevant research for me to work on.
      But it surely answers the question "How many things can go wrong in autism?" Also, it makes me think how discouraging it must be for doctors to try to treat this, even though the condition is very well defined.
      I'll have some digging through the gene list to do, and will share both that and the highlights when finished. At a preliminary glance it actually looks like the opposite to "excitotoxicity/oxidative stress" which is very intriguing. But it could also be that much of this list reflects what the body tries to do to counteract it.

      /Ling

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  12. Peter, what are the biggest wins for increased social aptitude? Is your sense that is it increasing intelligence and with that will come better know-how socially. For Monty, it sounds like his intelligence has increased, better with-it ness and better behavior for sure. How has his social interactions (besides not getting upset, etc) improved and what has been biggest driver? I know it is different for different segments. Last, which posts are the best for social improvements? Thanks! MH

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    1. If anyone would like to weigh in, would appreciate it. This is just more a question -- after you have achieve cognitive gains -- is there still a lot of residual social issues that may not be overcome? In these circumstances what are the big wins?

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    2. MH, I am emphasizing increasing cognitive function because this is easy to measure and hard to argue against doing. Some parents find the most important gains from bumetanide are social and emotional.

      Monty is very affectionate, happy and smiling. His main remaining autistic characteristic is that he does not talk a lot, he just says what he wants and answers direct questions. No gossiping or chit-chat.

      If the problems are primarily social, as in true Asperger's (high IQ). Then it is a case of making very small changes, like our reader Aspie 1983 is doing. This is going to be a very personalized therapy.

      Things like oxytocin would have a mainly emotional impact, but anything that helps in autism is likely to have a social benefit.

      So there are no easy answers. I only know what works in my son.

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    3. Thought id chime in as I have hopped back on the reuteri atcc6475, this time at the 'shocking' dose 8 tablets (4 tablets bidaily per day), about a week in now.

      I was sceptic in the past about it, but it does seem to be pro-emotional, this is a misconception about the oxytocin neuropeptide, it not only increases trust, but also possibly hate, jealousy and such.

      I noticed this about 4 weeks in, that I was approachable and I noticed my inner speach returned along with emotions such as both liking someone aswell as disgust (I was never able to fake this, so this is impossible to be placebo).

      Reuteri feels more as emotional intensification both for good and bad. I do feel that while on it I feel more of an urge to defend my opinion and stick to it, rather than trying to get away from a situation. Reuteri also makes me realise that I am actually alone, this made me somewhat depressed and this leads to an increase in motivation in me to look for social support. This is also a reason how I know its working, instead of my normal socialy withdrawal when theres something wrong with my life I actually seek help now! More spontaneous behavior also, for example I used to have a strong food regime what I would stick to, now since starting reuteri I sporadically ORDERED FOOD, while many of you might think whats so special about that, it means I stick less to routines and have more flexibility and openess (both for love and harm).

      Piracetam Im also still on, and it seems to improve the joy I have in life, thought it definatly needs least twice per day dosing as the duration seems ~3-4hours.

      CO-Q10, this helps, but going over 200mg per day seems to be oddly dulling (Q10 is proven to improve social and playing behavior in studies on kids with autism).

      Sulforaphane, currently not using this one, but this one is great for brain inflammation and stability, bit like NAC but that gave me side effects after longer use (blood noses and all that which freaked me out - 23andme results did show I have multiple SNP's with regard to blood clotting, VKCOR one aswell and yup I did have a horrible exerpience on K2, BEWARE if you have aspergers.)

      Vitamin D3, potent effect but blood levels build up fast, pro-social and calming with acute dosing but it is unsustainable due to blood levels building up...

      Oxytocin nasal spray (40-80iu/day): Unfortunatly this seemed to have somewhat inconsistent effects for me, but I believe this is due to me inhaling it which is the wrong way to use, theres videos on youtube how to properly use it, those who want to try it definetely look at the videos how to use it proper. Might give this one another chance and use it properly this time.

      Magnesium citrate paired with vitamin c and eggs: cholesterol, vitamin c and magnesium are a must for oxytocin production.

      Magnesiumoil (sleep aid for me), very calming unlike magnesium citrate, great for natural sleep, works far better for me than melatonin.

      Inositol (upregulates 5ht2a): calming effect, ability to 'let go', downsides: short duration and gives the shits in higher doses.

      Delete
  13. NO boosters/blood flow enhancers:

    Time released citrulline - improves mood, less effort in finding the right words and relieves sore muscles due to stress.

    Glycine propionyl l carnitine - proven to reduce lactic acid (commonly high in pretty much every form of autism) and a potent NO booster.

    Tine dose of krilloil (once to twice per week) - contains astaxanthin, very potent relieve of brain fog/brain inflammation, crystal clear thinking, love/hate relationship with this one as its both over energizing and seems to make one overconfident/arrogant when taken too often during the week, drastic improvement in eye sight and skin health (this is very noticable).

    Memantine: both good and bad, complete annihilation of stress due to its ability to effect LTP, more joy in things, more in the moment, downsides: can be mild dissociative, inability to give new memories a meaning (very scary this one) and one of the reasons I discontinued, absolutely not withdrawal symptoms noticed.

    HMB, doesnt do much to increase positive emotion, but keeps negative emotions away, protection of muscles during stress, lowers CK, LDH.

    Next on my list to try:

    Oleamide: effects cannaboid receptors, sleep aid, potentiates 5ht2a/5ht2c receptors.

    Bumetanide: obviously :)

    Psilocybin: Used this in the past once and while on it, I did feel increase affection towards others, lots of research currently being done on this for its ability to strong affect the amygdala.

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  14. Forgot to add, cordyceps is one of the best things I have tried to but currently not using due to costs of the new things im trying and using.

    More evidence that I am right about cordyceps holding potential (since its an AMPA PAM/positive allerostatic modulator):

    ______

    Fresh from the press!:


    Pharmacological modulation of AMPA receptor rescues social impairments in animal models of autism (may 2018)

    https://www.nature.com/articles/s41386-018-0098-5

    "Collectively, these results provide insight into the role of AMPARs in the underlying pathophysiological mechanisms of ASD, and demonstrate that modulation of AMPAR can be a potential target for the treatment of social behavior deficits associated with ASD"

    And voila, piracetam is also a AMPA PAM.

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