Fifty years ago few people had heard of autism. Now most of us know at least one person with a child somewhere on the autistic spectrum. According to the World Health Organisation 1 in 160 children are autistic, a figure that rises to 1 in 68 in the United States.
Generally manifesting between 12 – 18 months, autism is characterised by difficulties in communication, an apparent inability to form human relationships, an unusually limited range of interests and abnormal sensory issues.
At the severe end of the spectrum it is also often accompanied by intellectual disability, self injurious tendencies, violent outbursts, high levels of anxiety or obsessive compulsive behaviour, and in 30% of cases, epileptic seizures.
All of which makes living with a severely autistic child a deeply distressing experience with parents often powerless to do anything to ease their child’s suffering.
Parents turn to cannabis to help their autistic children
Something Abigail Dar knows more about than most.
Mother to severely autistic, 23 year old Yuval, she says: “I think people who don’t live with severe autism, can’t really understand what it means. It’s life in the shadow of hell. You live with a person you adore and love, and he’s restless and he’s anxious and he shouts. And he goes up and down and you don’t understand what he wants. And he drives the whole house crazy, leaving aside the self injury and meltdowns, just everyday daily things”.
Abigail from Israel, is one of a growing number of parents who have turned to medical cannabis in a bid to bring relief to their child’s autism. For the last year she has been giving Yuval cannabis and right from the start, the results have been remarkable.
“It was like magic. My son became a calm person, more concentrated, having a smile on his face, and over a year, he didn’t show any self injurious behaviour or any outbursts which for me and for him is a miracle. It was life changing, you know you can spend time with him without being frightened all the time”.
Yuval’s case is not alone. He is one of a growing body of anecdotal stories of severely autistic children seemingly transformed by taking medical cannabis. Cases such as novelist Marie Myung-Ok Lee, who herself decided to give cannabis to her then nine year old son J, who chose medical cannabis over the standard option of antipsychotic drugs.
After initially beginning with a synthetic cannabinoid medicine called Marinol, she turned to whole plant medical cannabis.
“Since we started him on his ‘special tea’, J’s little face, which is sometimes a mask of pain, has softened” writes Lee, “he’s smiled more. For most of the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. But soon after starting on the tea, his reports began to show real progress, including ‘two community outings with the absence of aggressions’“.
Special cannabis strain developed for children with autism
Other high profile cases include mother Mieko Hester-Perez who founded The Unconventional Foundation for Autism after discovering that medical cannabis helped her autistic son Joey. In a case mirroring that of Dravet sufferer Charlotte Figi and the strain Charlotte’s Web, Hester Perez alongside Kushman Genetics, have developed a high THC cannabis variant aimed at children with epilepsy called Joey’s Strain. Through her foundation she regularly advises parents on medical cannabis protocols for autism.
Despite the growing anecdotal reports and a burgeoning number of parents groups such as Mothers advocating Medical Marijuana for autism in the US and Kvutzat Hashavim in Israel, the use of medical cannabis to treat autism remains controversial and even in countries or states where medical cannabis is permitted, is not considered a qualifying condition.
Why does cannabis help autistic children? Scientists look for answers in Endocannabinoid System
However research is gradually shining a light on the possible connection between the endocannabinoid system and autism.
Discovered in the 1990s, the endocannabinoid system is a vast network of receptors (CB1 and CB2) and cannabis-like compounds in the body, that act to regulate functions such as sleep, appetite, the immune system, pain, mood and inflammation.
According to an article in Neurotherapeutics entitled ‘Endocannabinoid Signalling in Autism’, “the endocannabinoid system controls emotional responses, behavioral reactivity to context, and social interaction. Thus, it can be hypothesized that alterations in this endogenous circuitry may contribute to the autistic phenotype”.
Scientists have also found a link between high levels of neuroinflammation in cases of autism, with preliminary data noting higher levels of CB2 activity, suggesting this “may be a negative feedback response aimed at counteracting the proinflammatory responses implicated in the pathogenesis of this neurobehavioral condition”.
Studies also believe that the Endocannabinoid system plays a role in some of the additional disorders experienced alongside autism. Irregular sleep patterns are a common occurrence and are caused by a disruption in body’s natural body clock. Known as the Circadian Rhythm this is partly modulated by the endocannabinoid system and could explain the experience of parents like Dar, Lee and Hester-Perez, who saw their children’s sleep vastly improved by taking medical cannabis.
High levels of anxiety are also a common experience of people with severe autism. The non-psychoactive plant cannabinoid Cannabidiol (CBD) has shown strong evidence in scientific studies to have an anti-anxiety effect, as well as being anti-psychotic, which could explain why in the cases like Abigail Dar’s son Yuval, administering high CBD strains of cannabis have lessened his levels of anxiety and compulsive behaviour.
The growing body of evidence for Cannabidiol’s efficacy in reducing seizures in epileptic patients also indicates its potential therapeutic use for the 30% of autistic children with epilepsy.
But that’s not to say that it’s a ‘one-size-fits-all approach’ between the two disorders. Guidelines on dosing and strains for autism are generally scarce compared to epilepsy, which in most countries where medical cannabis is available, is considered a qualifying condition. For many parents, following a protocol similar to that of epilepsy is the first port of call, but doesn’t necessarily guarantee best results.
A standard medical cannabis treatment for epilepsy would be high CBD with only trace levels of THC, something that Abigail Dar found unsuitable for her son Yuval who became more hyperactive and restless.
That’s why she’s proposing more research into whole plant extracts and autism, rather than single cannabinoids.
“We know this plant has 111 cannabinoids, we keep talking about CBD/ THC because this is mainly what we know, and these are what most labs are able to check. But we also know the entourage effect, that a lot of other cannabinoids and terpenes that work or do something to help our kids”.
Dar is working alongside Dr Adi Aran, Head of Pediatric Neurology Unit at Shaare Zedek Medical Center, on a groundbreaking clinical study looking at the efficacy of treating autism with cannabis. On the 15th November she is launching a crowdfunding campaign to raise funds to extend the number of strains tested in the trial to include more whole plant varieties.
“I’m crowdfunding for the whole plant”, says Dar. “I know whole plant isn’t attractive to investors. You can’t get a FDA approval from a whole plant, you can’t patent it. But this is at the moment what will help our kids”.
If this clinical trial proves cannabis works for autism, the Israeli Ministry of Health will recognise autism as a qualifying condition, something that Dar feels very strongly about.
“When I started with Yuval, I had to appeal and he got his medical cannabis card under a mercy treatment. I mean they had no mercy giving him all these antipsychotic drugs, but in order to get the cannabis he had to qualify for mercy treatment”.
She continues. “This is going to be the first clinical research of its kind about cannabis and autism. And it must work because if they gave clean CBD or isolated cannabinoids, and it didn’t work for autism, it would be devastating because people wouldn’t bother to read exactly what they gave, they would just read cannabis doesn’t work for autistic people”.
In the meantime, Abigail will continue to treat Yuval with medical cannabis, convinced that the improvement in his quality of life and that of others is worth the fight.
“Let them have a better quality of life” she says. “And after that we’ll see if we can heal them or really help them be more focussed or less distracted. But let’s start somewhere”.
For more information on the crowdfunding appeal for the clinical trial into cannabis and autism go to Generosity