This is an interesting Rabbit Hole!

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Scanning through my inbox this morning I came across a question "What are the challenges and barriers in dealing with a syndrome patient?"

So my mind immediately thought that Syndrome was Asperger's Syndrome. So it naturally peaked my interest.

In searching through the answers provided, that was not true. The question was focused on CFS/ME.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest.

This sounds vaguely familiar to some of the traits that some Aspies experience. So I'm still interested. A quick search of the internet focusing on Autism and chronic fatigue syndrome led to the following.

Is Autism Related to CFS and Fibromyalgia?

Many specialists who work with autism as well as CFS and fibromyalgia - myself included - find that there is a major overlap between the three conditions. I suspect all three have related underlying processes and, given a specific genetic makeup, the very same processes that trigger CFS and fibromyalgia in adults can trigger autism in children.

The article then goes on to discussing a study:

The study was conducted by researchers at the Institute of Chronic Illnesses in Silver Spring, Maryland. They treated 30 children with ASD. The children were divided into two groups, with one group being given a daily dose of 50 mg of L-carnitine for every kilogram of body weight (e.g., a 60-pound child would have taken 1,364 mg of L-carnitine a day) while the other group was given a placebo.

After three months, the children taking L-carnitine had "significant improvements" in the severity of ASD, reported the researchers in Medical Science Monitor.

Improvement was measured in several ways and included improved scores on the Childhood Autism Rating Scale (CARS), which rates children on their ability to relate to people, body use, adaptation to change, listening response, and verbal communication; and on the Autism Treatment Evaluation Checklist, which evaluates children on speech/language/communication, sociability, sensory/cognitive awareness, and health/physical behavior. (You can download the checklist from the Autism Research Institute website.)

The researchers also linked higher blood levels of carnitine to hand muscle strength, cognitive scores, and CARS scores.

At this point, bell are ringing and lights are flashing. Why - because this is a simple treatment that might potentially help Aspies.

I have been taking Acetyl L-Carnitine daily as a supplement for around 20 years now. Acetyl L-Carnitine and Alpha Lipoid Acid were combined in a supplement was called Juvenon. The reason why I took this supplement is because it dramatically improved my lung functions. I had severe asthma and this offered an immediate and measurable help. So I wonder if this supplement might be one of the reasons why jimmy m. is still a bright eyed child of 71 years.

Who else on the Autistic Spectrum have been using this Acetyl L-Carnitine as a daily supplement and what observations can you relate in relationship to your Autistic Spectrum traits?

I have CFS, but I've never been offered that treatment.

Hmm...

Another one to my "To try" list. Never heard of this until now.

Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.

I am not too surprised that acetyl-L-caritine improved your lung functions like it did. According to PubChem, it plays a role in moving Acetyl-Co-A into mitochondria so that it can participate in the Citric Acid Cycle (part of the respiration process). Here is a link to the chemical information for those who want to explore more on it:

https://pubchem.ncbi.nlm.nih.gov/compou ... -carnitine

This is reaching a bit out of my area, as I am more of a materials synthesis chemist than a biochemist. However, PubChem says that it does have special properties in neurological systems. So, you may be on to something.

Here is an abstract of the paper.
A prospective double-blind, randomized clinical trial of levocarnitine to treat autism spectrum disorders.

The word levocarnitine is a liquid form of L-carnitine. I have been taking it in tablet form.

The full text of this article can be downloaded in pdf format at Research Gate
[I do not know if the reason why I was able to download was because I am a member of Research Gate?]

Scanning through the list of the papers references provides:
* Lombard JL: Autism: a mitochondrial disorder? Med Hypotheses, 1998; 50: 407–500
* Minshew NJ, Goldstein G, Dombrowski SM et al: A preliminary 31PMSR study of autism-evidence for under-synthesis and increased degradation of brain membranes. Biol Psychiatry, 1993; 33: 762–73
* Filipek PA, Juranek J, Nguyen MT et al: Relative carnitine deficiency in autism. J Autism Dev Disord, 2004; 34: 615–23
* Weissman JR, Kelley RI, Bauman ML et al: Mitochondrial disease in autism spectrum disorder patients: a cohort analysis. PLoS One, 2008; 3: e3815
* Malaguarnera M, Cammalleri L, Gargante MP et al: L-carnitine treatment reduces severity of physical and mental fatigue and increases cognitive functions in centenarians: a randomized and controlled clinical trial. Am J Clin Nutr, 2007; 86: 1738–44
* Wawremczul A. Sacher A, Mac M et al: Transport of L-carnitine in isolated cerebral cortex neurons. Eur J Biochem, 2001; 268: 2091–98

So it seems like there is an underlying basis to this research and it is not a one off paper.

The conclusions of the paper were:

In conclusion, the results of the present study suggest that L-carnitine therapy at a dose of 50 mg/kilogram body- weight/day over the course of three months of therapy significantly improved several clinical measurements of ASD severity. Further, there were significant correlations between increasing levels of serum free carnitine and several positive clinical outcomes among the study subjects examined. Overall, the L-carnitine therapy was well-tolerated. It is suggested that future studies further explore additional dosing regimens to identify the potential optimal dosing level or range of L-carnitine for subjects diagnosed with an ASD, to help to further elucidate the biological basis for L-carnitine’s mode of action at the cellular level, and also to identify mitochondrial dysfunction biomarkers for those patients diagnosed with an ASD that would most benefit from L-carnitine therapy.

Since this paper were published in 2011, I wonder where this branch of research is today?

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Open Access

Molecules 2019, 24(23), 4262; https://doi.org/10.3390/molecules24234262
Review
Effects of l-Carnitine in Patients with Autism Spectrum Disorders: Review of Clinical Studies


https://www.mdpi.com/1420-3049/24/23/4262/htm

firemonkey thanks for the link.

This article was published in the journal "Molecules" on 22 November 2019 so it is rather current. It seems more like a discussion of the state of research in the area rather than a new additional research. The abstract reads:

Carnitine is an amino acid derivative, which plays several important roles in human physiology, in the central nervous system, and for mitochondrial metabolism, in particular. Altered carnitine metabolic routes have been associated with a subgroup of patients with autism spectrum disorders (ASD) and could add to the pathophysiology associated with these disorders. We review the current evidence about the clinical effects of carnitine administration in ASD in both non-syndromic forms and ASD associated with genetic disorders. Two randomized clinical trials and one open-label prospective trial suggest that carnitine administration could be useful for treating symptoms in non-syndromic ASD. The effect of carnitine administration in ASD associated with genetic disorders is not conclusive because of a lack of clinical trials and objectives in ASD evaluation, but beneficial effects have also been reported for other comorbid disorders, such as intellectual disability and muscular strength. Side effects observed with a dose of 200 mg/kg/day consisted of gastro-intestinal symptoms and a strong, heavy skin odor. Doses of about 50–100 mg/kg/day are generally well tolerated. Further clinical trials with the identification of the subgroup of ASD patients that would benefit from carnitine administration are warranted.

So this article also focuses on negative side effects and dosage rates.
The negative side effects identified "gastro-intestinal symptoms and a strong, heavy skin odor". But these side effects became apparent at 200 mg/kg/day.

So it may of interest to descuss dosage rates.
I currently take one Juvenon "Cellular Health Supplement" per day. It contains 500 mg of Acetyl L-Carnitine HCL combined with 200 mg Alpha Lipoic Acid. The manufacturers suggested dosage rate is 2 tablets per day. So I have taken a half dosage rate for around 20 years now. Factoring in my body weight that means that I am consuming around 6.5 mg/kg/day of L-Carnitine. So this is a very small nominal rate. So generally, I can say that I don't experience any of the negative side effects mentioned.

Last year I ordered this supplement in capsule form rather than tablet form. I failed to see the fine print that these capsules contained half the normal dosage rate of the tablets. So I took only half my normal dosage rate for about a year. I did feel that this low dosage did affect me. It was like something was off. Hard to put into words. But I am now back on my normal dosage rate. So from my own experience and this research, I suspect a dosage rate between 6.5-100 mg/kg/day would be beneficial.

In the States, vitamins are not regulated like prescription medicine. This supplement is generally available in the vitamin aisle. So L-Carnitine can be purchased in any large drug store, health food store or over the Internet. I purchase my supplement, Juvenon, over the Internet and generally I purchase a one year supply at a time to keep the cost down.

The only other obvious trait that I observed using this supplement was my hair. Around 20 years ago before I started using this supplement my hair was falling out. This stopped almost immediately after I began using this supplement. Actually I even experienced some hair regrowth. Also my hair was starting to turn gray and white. This also significantly slowed down this process. So at 71, I still retain a little bit of my natural hair coloring.

For those who are interested . https://www.ncbi.nlm.nih.gov/pubmed/?te ... ine+autism

firemonkey, the first paragraph of the article is an interesting read:

Autism spectrum disorder (ASD) refers to a range of early-onset neurodevelopmental diseases, characterized by persistent deficits in social communication and social interaction, and restricted, repetitive patterns of behavior, interests, or activities. ASD affects approximately 1% of children and is becoming more common. The causes of these disorders are still poorly understood, but growing evidence suggests that autism is a multifactorial disease influenced by genetic and environmental factors. ASD is associated with several genetic disorders, and several studies have uncovered a range of metabolic abnormalities associated with non-syndromic cases of ASD. One of these, the alteration of carnitine and its derivatives, has been studied in both syndromic and non-syndromic forms of ASD. L-carnitine is an amino acid derivative found in almost every cell in the body and it is particularly abundant in muscles, where it plays a major role in the use of fatty acid for energy production. Adequate carnitine levels come from endogenous synthesis or from diet, especially meat, fish, and dairy food. Most fruits and vegetables are not rich in l-carnitine. An omnivorous diet provides about 50 to 100 mg of carnitine per day, 80% of which comes from meat, while a vegetarian diet provides around 10 mg of carnitine/day. L-carnitine biosynthesis is performed with two ultimate precursors: Lysine and methionine, and the enzymatic reactions involved in this synthesis require several cofactors: vitamin C, iron, vitamin B6, and niacin. L-carnitine biosynthesis involves various organelles (the nucleus, the mitochondria, the peroxisome, and the cytosol) in various tissues and organs: kidneys, liver, brain, and so forth. The biochemical role of carnitine concerns the mitochondrial metabolism of long chain fatty acids, peroxysomal beta oxidation, acetylation of histones, and protection against the deleterious effects of free radicals. The first study reporting reduced serum plasma carnitine levels in 100 children with non-syndromic ASD was carried out by Filipek et al., and this also demonstrated concomitant slight elevations in lactate and significant elevations in alanine and ammonia concentrations, suggesting a mild mitochondrial dysfunction. A mitochondrial defect may be the origin of the carnitine deficiency in these autistic children.

That last paper cites the results of another interesting paper:

A study by Witters et al. reported that almost all patients with propionyl-CoA carboxylase deficiency (PCC gene), known as propionic aciduria, fulfilled criteria for ASD. Autistic features were present in all (N = the patients with propionic aciduria, including repetitive movements or hand flapping, ritualistic behavior, stereotypical behavior (three patients), abnormal social interaction (seven patients), communication difficulties (all patients), and inflexibility in planning (all patients). Besides ASD symptoms, they display motor delay, intellectual disability, delay speech development and some of them presented hypotonia [decreased muscle tone] and gait impairment as the most common neurological alterations in the series. The treatment of these patients included carnitine (50–100 mg/kg/day) and biotin (10 mg/day) and a low protein diet. No information on the effects of carnitine administration on ASD features and other central nervous system manifestations was reported, but patients with early treatment and good clinical and metabolic management were less likely to develop neurological and neuropsychological features, including autistic features and ASD.

The Witters study:
Witters, P.; Debbold, E.; Crivelly, K.; Vande Kerckhove, K.; Corthouts, K.; Debbold, B.; Andersson, H.; Vannieuwenborg, L.; Geuens, S.; Baumgartner, M.; et al. Autism in patients with propionic acidemia. Mol. Genet. Metab. 2016, 119, 317–321

firemonkey perhaps you could answer a question. In the States if you want to buy vitamins you simply go to the store and buy them. But I heard that in the U.K. vitamins are restricted and that you need something similar to a doctors prescription in order to purchase them.

I pulled up an old article from 30 June 2003.

It said "Hundreds of vitamins and food supplements taken by millions of people every day are to be banned under new EU rules. The regulations will outlaw the sale of 250 vitamins and minerals in Britain, many of which are already banned in other EU countries.

So what is the current state of things in the U.K.?

I've not done much in the way of buying supplements or vitamins, so am ill qualified to comment on the matter . I've got vitamins etc before from Holland and Barrett. I take folic acid because my level was low. Current and previous lot of that came from a supermarket .

I've never had a doctor's prescription for such .


https://www.hsis.org/food-supplements-regulations/

I hope someone can provide you with better info .

Very interesting stuff. My aspie daughter's first diagnosis was for low muscle tone due to carnitine deficiency. Her muscle tone was improved by carnitine supplements. Her ASD is very mild and was not diagnosed until age 18.
I may have had the same low muscle tone as a kid, but did not get carnitine supplements. I feel my ASD is worse than her's, but then there's the m/f diagnosis gap issue.

She took the L-Carnitine from age 20 months to 9 years. It was a Liquid Rx L-Carnitine. I don't know the dosage. During this time she was diagnosed with Selective Mutism although the docs kept considering PDD and deciding she wasn't quite on the spectrum. At age 18 she had a got a diagnosis of ASD-1. I can't really know if the Carnitine was beneficial for her PDD.

I generally take a Juvenon tablet (which contains Acetyl L-Carnitine) first thing in the morning. I still retain quite a bit of stamina (the ability to perform physical work). For example yesterday I went to the YMCA and swam 32 full lapse in an Olympic size pool (1 mile). IMHO not bad for a 71 year old. It seems like stamina is the opposite of Chronic Fatigue Syndrome (CFS).