Talking to: Dr. Adi Aran, 47, director, neuro-pediatric unit, Shaare Zedek Medical Center, Jerusalem, who’s studying the effects of cannabis oil on autism. Where: In his office. When: Thursday at 11 A.M.
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Minutes before I entered, a child who’s a candidate for research you’re working on left the office. Tell me about that child.
He’s 9 years old, suffers from autism and doesn’t get along in school. It’s hard for him to sit, he has outbursts, bites himself, bites others, hits children. His parents think he has a lot of potential, and that was my impression too. He also seems to understand more than he would appear to externally. His mother relates that when he watches movies, he laughs at the right places, and when he’s told the family is going to the beach, he goes and brings his bag.
When you say “school,” you mean special education.
Of course. It’s a school with eight children and four staff members. Every morning, when the school bus comes, he throws his bag around, bites his mother, bites himself, bursts out. He gets medication, of course, and behaves that way despite the drugs.
What medication does he get?
Antipsychotic drugs. About half the autistic children have behavioral problems that antipsychotic drugs have been found helpful in treating. The most popular medications are the ones given to most schizophrenic patients – Risperdal [risperidone] and Abilify [aripriprazole]. This boy is on medication, but his behavior hasn’t become moderated. The parents say that it’s very hard for them. The boy is not calm. He wants to be at his mother’s side all the time, even when she’s in the shower, and even if the father is with him, he can’t cope with it. He’s very much afraid of heights, of people, of noise.
And you are considering adding this boy to the research you’re conducting – the first of its kind in the world – on treatment of children with autism with cannabis.
It is indeed the first study in the world that’s examining the effects of cannabis on autism. The research is still ongoing, and I want to be very careful about what I say, but as of now we are seeing very good results – we see an improvement in behavioral problems.
You’re referring, undoubtedly, to cannabis oil.
Yes. Oil that’s placed under the tongue. We start with one drop and go on from there.
Can I try it?
Yes. It probably won’t have an effect on you; it doesn’t have the effect for which people generally use cannabis. It doesn’t cause a high.
Yes, it doesn’t have THC [the principal mind-altering ingredient in the cannabis plant].
I’ll have a taste, too. The truth is that I haven’t tried it until now.
It doesn’t make you high, but the bottle says “dangerous drug.” Why’s that?
Because as far as the Health Ministry is concerned, cannabis is cannabis, and they don’t take into account the different types or the different levels of active substances in the plant. I find that to be a problem, because when I get a permit to give cannabis to a child, they don’t actually care what I give him, and there’s no supervision. Personally, I don’t like giving THC to children. We had a case here in which the parents of a patient insisted that we give her a compound containing THC, and she had a psychotic attack. We’re still traumatized by that case.
The Dangerous Drugs Ordinance is sweeping with regard to cannabis.
Right, and it makes no difference to the authorities that what we give here is no stronger than Acamol [the analgesic paracetamol], for this purpose.
Maybe you should explain about CBD and THC.
When we talk about cannabis, we’re actually referring to the specific type that has a certain effect, because every type affects the brain differently, according to the levels of active ingredients it contains. The compounds distinctive to cannabis are called cannabinoids. There are more than a hundred of them, but the main and most familiar ones are CBD [cannabidiol] and THC. People who smoke cannabis for pleasure are seeking THC.
The psychoactive element.
Yes. It’s responsible for the feeling of being high. Most of the medical types of cannabis also include mainly THC – that’s what people want. That’s also what probably helps treat people who are suffering from pain, nausea, lack of appetite, Tourette’s and so forth. We don’t like to give THC to children, because there’s evidence that at a young age it can cause addiction, aggravate anxiety, sometimes even induce psychotic events.
What about CBD?
The studies done with cannabis showed that the more CBD it contains, the more it interferes with the feeling of the high. CBD affects the brain but it’s not psychoactive. On the contrary: It lowers the high, reduces anxiety, diminishes psychosis; it’s generally anti-inflammatory, it protects the brain, and is therefore its use is increasing, particularly with epilepsy. There’s evidence that as long ago as 5,000 years ago, it was used to treat epilepsy.
In recent years, we are seeing cannabis used as medical treatment for a whole range of problems and diseases. How did this all begin?
It is still an illegal substance, and until not long ago it wasn’t on the medical agenda. The process actually started because of parental pressure. Parents of children with serious diseases are constantly looking for answers, and one of the things they asked to try was cannabis. The medical establishment didn’t support that. The parents were told that if they wanted to try treatments like that, they needed to apply to their governmental authorities. In the end, various states acceded, and permitted it. The first was Canada. In Israel, too, it was allowed relatively quickly, in 2008. But there were still a lot of reservations. Physicians refrained from prescribing it.
The difficulty the system has is that the information is anecdotal. There’s no proof.
There is no proof, only the testimony of people who say it helps them. Of course, there are also people who say that holy water helps them. And people whose children are sick will grasp at anything, which is understandable. In the end, it became possible, in terms of regulations, because of parental pressure. Physicians then began to examine it, and they conducted studies. More and more evidence accumulated suggesting that it really helps. Just last month, the New England Journal of Medicine, which is the most highly regarded medical journal, published the results of a study conducted on about 300 children. It found that the effects of cannabis in treating epilepsy last longer than those of other medications.
Where did the idea of trying cannabis on autistic children originate?
Again, from the parents. These are families that are living in isolation, with tremendous difficulties. They have a child with whom they can’t leave the house, the medications don’t help, and they are simply desperate for a solution. Parents began coming to me four years ago to ask about treatment with cannabis. I told them we had no proof that it works. But the truth is that it’s very difficult to say no in the face of the parents’ immense distress, and we had already seen that it really does help in treating epilepsy. So we said we’d give it a try.
Was it tough to convince you?
At first, yes, but the more time that passed, and the more cases I saw in which it helped, the less skeptical I became. I’m still cautious.
Have you ever used cannabis?
That’s an interesting stance from which to launch a study like this.
True. I never tried smoking street cannabis. I was in situations where it was offered, but I didn’t want to. I also only tasted this substance now, because of you. I’m really not afraid of CBD.
At my age, no. But I would prefer if my children don’t touch it. Maybe it’s conservatism on my part. Could be.
So, how did you manage to get this study going?
First, we had to cross the barrier of the Ministry of Health, which did not permit the use of cannabis for autism, but only for cancer and chronic pain and the like. We tried to persuade them. We explained that there are serious problems, that there are cases with strong children who hit their parents, and that the [existing] medications don’t help. They decided to approve it in very exceptional cases, and at first we worked only with truly difficult cases. We administered the oil in addition to regular medications, and most of the parents reported that it helped.
What did they say?
For example, that children whom the school-bus drivers had refused to take – because they were very wild even when they had someone accompanying them – started to use the bus. They sat nicely in the classroom. High-functioning children who received the oil were able to move to a better school framework, such as a regular class in combination [with special education]. Children who suffered from serious anxiety reported lower anxiety. In the light of these reports, we decided to conduct a large-scale controlled study. There is no other way to test new things in medicine.
In a controlled study, some of the participants receive a placebo. Isn’t that somewhat problematic in this situation?
That truly is an issue. There was a great deal of discussion about it. I was asked how I allowed myself to give autistic children a placebo. It truly is very problematic to introduce a placebo into a study in which all the participants are in such a delicate condition. But in the end, it was decided that it we want to reach a situation of use in regular treatment, there was simply no choice. It’s true that it’s very difficult to give a suffering child a placebo, after it was seen that the first period of the treatment helped him. But we are thinking about the long term, and there was no choice.
Do you think there’s a placebo effect in the case of children with autism?
There are children who understand that they are taking a medicine that is supposed to help them, and then the brain activates a neural track that is beneficial, even though the medication did nothing. That of course depends on how much the child understands, and it’s not relevant for low-functioning children.
How many children are taking part in the study?
We decided on 120.
How did you select them? What’s the profile of a child who’s suitable for this kind of study?
We are still accepting children for the experiment. There’s a waiting list. There are now 53 children, with autism and behavioral problems, who are participating. Also taking part are children in regular education who have behavioral problems and who have a caregiver, because we see that it helps them, too.
Describe behavioral problems.
Behavioral problems aren’t necessarily what people think. Parents often come to me and say their child has problems with behavior. I ask what they are, and they’ll reply, for example, that he doesn’t speak. That is not a behavioral problem, from my point of view. It’s one of the core symptoms of autism, which of course we cannot cure. I am referring to outbursts, difficulties in school and the like. Children who are stabilized, with or without medication, are not suitable for this study.
I imagine that you have to deal with quite a lot of preconceived notions.
Definitely. Not long ago I was called to intensive care here in the hospital, to see an epileptic child in serious condition. I wanted to give him a little of the oil. The director of the ICU simply held her ground and said that it would not enter her department under any circumstances. Yet behind her there was a cabinet full of medicines two drops of which could paralyze a horse. But they were afraid of the oil. There is a lot of fear.
You are examining effectiveness on three levels: with behavioral problems, with communication difficulties and with anxiety. Are they interrelated? When anxiety is moderated, are behavioral problems also moderated? When there is less anxiety and fewer behavioral problems, is there also less frustration, in which case resources can be diverted in order to communicate?
Yes. We think that that’s what happens. We have observed a link between behavioral problems and anxiety, and in fact every element in this equation affects the others. The parents say that the child is less preoccupied. Previously he was constantly occupied with biting himself. They need a deep stimulus, you know, and now they are biting themselves less and turning to other things. Including communication. We are also examining how this affects the attitude of those around the child, because clearly, when he’s calmer it’s easier to work with him.
How do the parents describe the change?
In the controlled experiment, we don’t know whether the child received medication or a placebo, but the parents definitely say it helped. They say that the child is more present, he’s there, they speak to him and it’s not like talking to the wall, they ask something of him and he understands. There are fewer outbursts, and that improves the quality of life for everyone. There are some truly amazing stories. For example, a 20 year-old who opened the door for his sister, spoke her name and hugged her, after 20 years.
Astounding. What do the children who are able to speak say?
They feel that it’s doing something for them. One child said it makes his blood flow really fast. Words of autistic children are something complex, especially in high-functioning cases. They have a language of their own.
As a doctor who’s been dealing with this for as long as you have, do you think you have any sort of understanding of the autistic experience?
Look, it really is a very wide spectrum, but still, every day I encounter something new that amazes me.
The writing phenomenon.
Low-functioning autistic children who don’t speak, who shut themselves in their room. There’s no real way to communicate with them. Ask such a child if he wants water, and he won’t be able to answer. And suddenly, parents told me that the children are writing. At first, the doctors said, “Nonsense, the child can’t speak a word, how can he possibly write?” We thought that perhaps the parents were helping them write, like in a séance, where it’s not clear who’s moving the glass. When they showed me what they wrote, I couldn’t believe it.
Can you show me?
I can read it to you. I have it here on WhatsApp. “The day that at last happiness arrived on which a bouquet of roses is intertwined on my head, you came together beloved family members put on tallit [prayer shawl] say amen to tzitzit [ritual fringes] songs and prayers that are said again by me that I separately dream that the day will come when the words of piyut [liturgical poetry] from my throat will break through that I will call by their name my mother and my father.” He wrote that for his bar mitzvah.
That’s a text written by a low-functioning boy?
Yes, after he received cannabis treatment. This is a boy who generally doesn’t speak. He only roars, and it looks as though he doesn’t understand anything.
That is truly shocking. How do you explain it?
We don’t entirely know. These children not only don’t speak, they don’t want to speak, and suddenly they are writing and a whole world opens up. Until a few months ago, I was dubious, but then I saw it with my own eyes. A boy who hadn’t spoken a word, and it turned out that the teacher had insulted him in school, took a sheet of paper and wrote: “May the name of the person who did that to me be despised.” There are parents who push the child to a regular school in combination [with special education] all the time, and we tell them to leave him be, what can the child do there other than play on the swing – he’s not learning anything. And suddenly you discover that these children, who sat in the classes and seemed not to be there, learned something, after all.
It’s amazing how little we know what people are thinking. A low-functioning child who doesn’t speak. I saw how a number is shown to his mother from behind his back and he writes it. That really is a phenomenon I can’t explain. I don’t think that he himself understands that he’s mind-reading. The team in the preschool discovered that he answers questions and knows things that there’s no [rational] way he could have known. I am just astounded by all these phenomena. We really know and understand so little about autism.