Reflections on One Year and 100 Children
The Israeli Health Ministry’s IMCA (Israeli Medical Cannabis Authority) began to consider a possible formal indication of autism for medical cannabis treatment as a response to pressure from a group of mothers spearheaded by Ms. Abigail Dar and Ms. Sharon Imberman. IMCA requested that |I propose this indication which I did more than a year ago. Mss. Dar and Imbermanlater turned to me and asked that I take on the role of referring children for this license. The result has been experience with about one hundred such children over the past year. It is time to reflect on this experience. I will relate my reflections as just that – the way I have come to think. Obviously, rigorous research is reported in a different manner, but as a solo practitioner, this is consistent with the way I work.
Autism can be conceptualized as one entity with variable expressions or as many entities with some features in common. My scientific proclivity is to the latter. Thus my experience is, as I see it, with a heterogeneous group of children, some of whom suffer from epilepsy as well, some of whom seemed to stay a deviant developmental path from birth, some of whom made an about-face in their development in the second year of life, with or without association to vaccinations and febrile responses to vaccination. Most are indeed male. It would be highly desirable to associate some of these features with responses to the various cannabis-based treatments, but that is unfortunately for the future.
About half-way through this period, I began to wonder how to understand the responses to these children to cannabis. As I looked into the neurobiological literature, I was struck by three facts which I will attempt to explain here:
- Brain science in the last decade has described two different patterns of communication between the various centers in the brain. The pattern I will call “Inner-directed” (the research jargon “Default Mode” tends to confuse communication) involves functions such as processing inner feelings and perceptions and figuring out how others feel. The pattern I will call “Outer-directed” (“Executive Mode” in jargon) involves functions of “doing” in the world.
- The continuous rapid and unhindered flow of communication between these two patterns of function is moderated by the ratio between two “endocannabinoids” (molecules present in nature whose function is enhanced by the two known major molecules of the cannabis plant [“cannabinoids”] – THC and CBD).
- The communication between the Inner-directed and the Outer-directed patterns of organization of the brain seems deviant in autistic children.
These three facts let me to hypothesize :
- The ratio of THC-like: CBD-like endocannabinoids may be problematic in autism, and treatment with cannabis may be a way of at least partially correcting this ratio.
It is with this hypothesis in mind that I will attempt to make some sense of my experiences.
Treating autistic children was derived from treating epileptic children – the two mothers I mentioned above received medical cannabis for children with epilepsy who were also autistic and were astonished to see a positive effect on both syndromes. Children are first given a gradually increased dose of an oil that contains 30% CBD and only 1% THC. The dosing is twice to three times a day with each dose stabilizing at between 3 and 10 drops. About 2/3 of the children respond favorably to this regimen. They become more present, make better eye contact, and listen more attentively. Those who had suffered from attacks of intense rage – often with self-harm or violence to others – or attacks of intense crying seemed to just shed these attacks. Some had improvement in speech or even beginnings of speech where there was none. Once an “optimal” dose of the mainly CBD-oil was achieved, that is that there was no further improvement despite increasing dose, some additional drops of an oil with more THC than CBD (6%: 1.5%) was added and about half the children gained a further improvement. Those who did not were left to take the CBD-rich oil only.
Here follows one case example among many. Just the other day David came with his parents ti renew his 6 month license as required by IMCA.. He is a large 13 year old who was diagnosed at 17 months and has been educated in autism-specific frameworks ever since. Treatment with antipsychotic medication contributed to obesity but not to tranquility. He was having fits of “violence” and “self-harm” many times daily, including biting his hands. He needed a medical evaluation for the iatrogenic obesity and required 12 adults to hold him down to draw blood. David started taking 4 drops of the CBD-heavy oil twice daily and the extreme behaviors melted away almost completely. One of the antipsychotic medications was gradually stopped. In retrospect his parents concluded that these “attacks” had been expressions of extreme frustration with his inability to find smooth contact between himself and the world. Once we added one drop of oil with more THC to the CBD oil David made an additional move towards more openness to the world, He became more present, began to struggle to express some words, began to listen more and even learn at school. After a somewhat rocky return to school in September, during which his teachers expressed grave doubt about the effects of the cannabis despite what his parents reported at home, suddenly his teachers discovered his ability to pay attention and learn and supplied the parents with three videos of David’s newfound ability to participate in learning and in music. His visit to me was transformed from a session in which I felt constantly threatened by his size, lack of quiet and unpredictable behavior to a session in which he wandered quietly, listened to his parents more clearly, and made some eye contact and even glimpse of a smile at me. His parents, satisfied with his progress, had not been active in reporting to the virtual groups of parents, so their experience remained private. Empirically we decided to test 2 drops of the THC-containing oil to see if the balance improved further. His parents and teachers were encouraged to use his musical ability to enhance progress with use of language. We planned that once the balance of THC:CBD was optimal we would attempt to gradually withdraw his remaining medication.
Now these results are simply astonishing. I have had experience with children with autism since my medical school days in the early 1970’s, and I have never seen an agent that actually worked this well, and with virtually no side effects. The majority of these children had been treated with anti-psychotic medications to quiet the rages (the result was often the opposite) or stimulants to quiet the inattention (also with opposite effects mostly) and there were plenty of side effects, either overweight with the former or uncontrolled weight loss with the latter. I began to imagine that these awful destructive attacks were mainly an expression of frustration with the difficulty inn flow between Inner-directed and Outer-directed experience and organization. That could explain how these attacks simply disappeared as the frustration was altered with a closer to normal CBD-lie: THC-like endocannabinoid moderation of the flow between the two patterns.
After the attacks were ameliorated, parents often would say’ like David’s parents, that they felt that the attacks were not “rage” or “violence” or “self-harm” or crying but rtaher expressions of frustration. In addition the improvements in attention, listening, speech and learning could be due to relief from frustration or to a direct improvement in the flow between the two brain patterns that these functions require.
What about the other third? In several cases in which the CBD-rich oil exacerbated disturbed behavior, I reduced the dose by having the oil diluted in olive oil. The response to the dilute solution was not unfavorable, although a true balance has not yet been achieved. In about half of the cases, changing to the THC-rich oil and then mediating with a smaller amount of CBD-rich oil created a satisfactory solution. This made me think that perhaps a minority of autistic children have a deviant THC:CBD ratio that requires a relatively larger enhancement of the THC over the CBD. When a balance was achieved, the frustrations diminished as they did when a balance was achieved with the CBD-top heavy treatments with the majority of children.
I found that talking with parents about the hypothetical ratio was both challenging and enriching. The challenge came from the general assumption, true in lay and medical communities alike that any molecule works as a “medicine” but altering one small precise area of cells. That is the theory of all the conventional medications that were tied. The rages were a “behavior” that could be “quelled” by a medication that quiets certain cells. But a ration of THC-like: CBD-like molecules adopts a different perspective. Conventional Western medicine, for better and for worse, approaches the body as matter, a “chemical imbalance” is one molecule (matter) which is either excessive or deficient. The balance ratio perspective is closer to an approach to energy or information, at a higher level of organization with communication between two patterns of organization. I often say that it is as if we have been admitted into the “operating system” of the brain. The enrichment enters when parents experience the virtual evaporation of horrible rage attacks and do not experience their children as quelled, but rather as balanced and able to move ahead. This perspective also permits parents to cooperate in the adventure of seeking the right balance, of altering the burden of the oils, which is nearly impossible to conceptualize as “THC does this and CBD does that”.
A current challenge involves talking with schools. Educational personnel have been conditioned by my colleagues to expect “quieting” medication and assume that cannabis is just another medication’ like David’s staff that at first was incredulous to his parents’ reports of changes at home. In addition, the children are not “quieted.” Sometimes, without the rages, a child may become more present, more demanding, more expressive rather than more docile. The current challenge is to help educational staff members to recognize the more subtle aspects of rebalancing the “ratio.” Another challenge involves that fact Israel’s population, perhaps more than any population excepting the USA, was subject to a very aggressive “War on Drugs” that severely demonized cannabis. There is still a negative bias; some thought that children are “high” on the treatment, that it must be somehow dangerous.
These reflections leave plenty of desiderata for more rigorous investigation. Here are some of the questions to be worked out:
- Are there historical or behavioral markers that can predict which children will require which THC:CBD treatments?
- Is there a way to predict which children will require substantial reduction in dosage?
- What are the precise chemical compositions of the different oils, and what are the precise range of ratios that are optimal?
- What are the precise mg/kg doses of CBD and THC that are effective?
- What molecules other than CBD and THC play a role in the beneficial effects of cannabis in autism?
- What is the effect of cannabis on long-term development?
- Can cannabis treatment open a new developmental track and then be terminated?
I hope to be able to address some of these questions in my reflections in the next year. Perhaps by then something like an algorithm could guide cannabis-based treatment more reliably. It should be clear by now that it is my opinion that a flexible-dose problem-solving open field trial is the appropriate research tool at present. It is clear to me that a fixed-dose open field trial is premature and not coherent with the field being investigated, and most certainly that enlisting autistic children in a randomized control trial of a fixed cannabis dose compared with placebo is highly questionable on both scientific and ethical grounds.
My thanks to Mss. Abigail Dar and Sharon Imberman who have entrusted me with this remarkable clinical adventure and to Dr. Michael Dor and Mr. Yuval Landschaft of IMCA for cooperation in granting the licenses. I first formulated the hypothesis put forward here in a lecture (in Hebrew) in a course on Medical Cannabis at Hadassah College of Jerusalem coordinated by Ms. Liad Mordov, to whom I am grateful for that opportunity. Sources for the research literature can be found there. My wife Gilda provided great encouragement despite the considerable burden on my time. Discussions regarding several aspects of this project with Ms. Hana Avnet helped to sharpen my thinking. Above all I express my gratitude – and undying admiration -to the parents and children who have taken part in this odyssey.
This communication is not intended to be limited to the “scientific” community for two reasons. First, I do not have at my disposal the tools to complete a rigorous study. Second, it is my conviction that there is a solid place for open-source communication in all areas concerning the revolutionary experiences now available with cannabis and that these new experiences belong to everyone, not just to career investigators. Once cannabis is legalized, which is in my opinion the only honest and rational course for the future, there will be as much self-treatment as “professional” treatment and the lay community will need access to open-source guidance.