The average parent couldn't imagine anything more bizarre than giving their small child some marijuana. But children with autism spectrum disorder or (ASD) are not typical children and their parents are anything but average.
Chances are, you know a child with ASD, as The Centers for Disease Control and Prevention has reported a diagnosis rate of about 1 out of every 59 children in the US, with a more common rate found in boys than girls. But do you really know what living with them is like?
Most parents expect to spend the first three years of their child's life being hypervigilant and then slowly wean off giving them more independence. When a child has ASD, the constant supervision can never end. Every decision cannot be taken lightly. Is there a babysitter you can trust? Can you maintain a job? Grab coffee with a friend?
As a parent to 4 boys, Rachel thought she knew what to expect when her fifth son was born. What she didn't count on was that he would be diagnosed with Autism Spectrum Disorder. At first the differences between her son and his peers was not so significant. But as he grew older, his peers outgrew their baby and toddler behaviors and became more communicative and social, it was clear Rachel's nonverbal and nonsocial boy was not progressing in a neurotypical way.
He's now 10 years old. As each year rolls by, the symptoms stay the same. He's a growing boy who cannot communicate verbally, doesn't connect with his peers, can't be in crowds, cannot control his tics and doesn't sleep well. The toll it takes on the rest of the family is mentally and physically exhausting.
Living with behaviors long term, that are much more severe than typical challenging behaviors, can cause real strain on parents and siblings. They love their children but the lifestyle is just not sustainable. Which is why the thought of giving their children a drug like cannabis could even be entertained.
What Is Autism Spectrum Disorder?
ASD manifests itself differently in different people. Not all children with ASD will experience the same symptoms and the traits they do have can be anywhere from mild to extremely severe. The National Institutes of Health (NIH) lists some common traits including: delays in communication, finding social interaction to be challenging, having various sensory issues and repeating behaviors or tics.
In addition, many children with ASD experience irritability, which again can be expressed in a scale from mild to severe. What this means on a practical level are tantrums, aggression and violent (sometimes self-harming) behavior.
Autism Spectrum Disorder expresses itself uniquely in different children, however there are traits they share such as delays in communication, impaired social interactions and repetitive behaviors. In addition, irritability can cause tantrums, aggression and violence.
With such a great need for treatment, the options are sadly lacking. This is why the US Food and Drug Administration (FDA) actually approved powerful antipsychotic drugs for children.
Let's be clear. Parents are not overjoyed to give their children antipsychotic drugs, but there is simply no other FDA approved effective option.
Part of the issue is that finding out the cause for a child's irritability is almost impossible. They may not be able to let you know their ear is bothering them or that they're sad about something. What they do instead is try and communicate in a way that may be scary or violent.
So, the FDA has approved antipsychotics as a treatment for autism, they are:
In addition, other antipsychotics are administered by doctors even if they haven't been expressly tested for children with ASD.
While there was a significant improvement in irritability, self-harm and aggression, there are also worrying side effects such as:
- Weight gain - Putting children on these drugs means you must be committed to making sure they stick to a strict regimen of diet and exercise. As type 2 diabetes is a growing worry for children and getting a child with ASD to agree to a prescribed diet can be extremely difficult, this side effect is not a small one.
- Hyperprolactinemia - This is an excessive production of prolactin, similar to what women produce when they are pregnant. This can cause swelling of breasts, amongst other symptoms.
- Sleepiness - A child will not be able to progress in their therapies if they are experiencing extreme lethargy.
- Dyskinesia - A kind of movement disorder which causes muscles to move involuntarily and uncontrollably. This can further distance children socially.
Obviously, these are not drugs which anyone relishes giving their children. Parents have to make a difficult decision of accepting the potentially harmful side effects. Only parents with no other option can agree to it.
There is no cure for Autism Spectrum Disorder. Treatment options strive to minimize its symptoms. As of now, the only FDA approved medicines are antipsychotic drugs with severe side effects such as weight gain, hyperprolactinemia, sleepiness and dyskinesia.
Hope From Colorado
Another option did show its face in the form of an epileptic child in Colorado. Charlotte Figi had her first seizure at 3 months old and was subsequently diagnosed with Dravet Syndrome. This is a rare syndrome which causes severe epilepsy. For Charlotte, taking medication and going on a ketogenic diet, did nothing to effectively stop her seizures.
By 2 years old, she went through a noticeable cognitive decline. At age 3 she was wheelchair bound and no longer talking. By 5 years old she was having 1200 grand mal seizures per month. Her parents heard of someone else being treated with cannabidiol. They persuaded a grower to let them try it on her daughter. What's unique about this strain of cannabis is that it was grown to have 20 parts of CBD to 1 part of THC.
Medical cannabis was given to Charlotte Figi, a child in Colorado, as a last resort for her severe epilepsy. This cannabis was made to contain 20 parts of cannabidiol to 1 part THC.
What Is Cannabidiol And How Does It Work?
Cannabis contains different chemical compounds. Perhaps the most well known of these compounds is delta-9-tetrahydrocannabinol or THC, this is the substance responsible for feeling a 'high' from marijuana. Cannabidiol (CBD) is another compound. This does not have any hallucinogenic properties but does have potential antipsychotic effects and is being is being studied for its anti-inflammatory effects as well.
After taking CBD in the form of drops of oil in her food, Charlotte was able to have her life back. At age 6, she was down to 2-3 seizures per month. She was suddenly walking, talking and riding a bicycle. That was in 2013. She's now 10 years old and because of her, many other children with epilepsy have been improving under this cannabis strain, called Charlotte's Web in her honor.
The best part is, it's not just anecdotal evidence. There are clinical studies that were done which prove the efficacy of CBD for pediatric epilepsy.
The Endocannabinoid System
To understand how cannabidiol works, we need to look at the endocannabinoid system. This system was discovered in humans and animals in the early 1990s. It's responsible for our bodies making and releasing cannabinoids. These cannabinoids either bind to receptors or they help in homeostasis, i.e. maintaining the body's internal stability.
The receptors are found on almost all the cells in our bodies which means that the endocannabinoid system affects our organs, brain, glands, immune cells and connective tissue.
Phytocannabinoids are substances made from plants which stimulate cannabinoid receptors. When you take a small dose of a cannabinoid, that will tell your body to make more endocannabinoids and make even more cannabinoid receptors. With regards to the compounds in cannabis, THC will bind to a receptor to give people a 'high' but CBD works in more indirect ways to help the body maintain its processes.
Cannabidiol or CBD is a compound found in cannabis which does not give the user a 'high' and it was used to successfully give Charlotte her life back. CBD is a part of the endocannabinoid system which makes and releases cannabinoids. These cannabinoids are able to affect almost all the cells in our bodies. Phytocannabinoids are substances made from plants which work to stimulate cannabinoid receptors. Whereas THC will bind to a receptor, CBD works in more indirect ways to help the body maintain its processes.
CBD And ASD
Because many seizures are often associated with ASD, parents noticed that the CBD taken for epilepsy was also helping Autism Spectrum Disorder symptoms. But then the natural progression to test out the theory if cannabidiol could help children with ASD came to a halt.
The big problem became how to create real clinical studies on an illegal substance in the United States. Marijuana is still classified as a dangerous drug, even though some states have legalized it.
Hope From Abroad
Enter Israel. Medical cannabis has been available in Israel since the 1990s and is mainly used as a respite from pain, either because of chronic diseases or from cancer therapies like chemotherapy. There are 8 grow houses in Israel, each offering a selection of different strains of cannabis. People with prescriptions can chose to ingest medical cannabis via food, oil or simply smoke it.
Dr. Adi Aran is the director of the neuro-pediatric unit at Shaare Zedek Medical Center in Jerusalem. He was reluctant to try CBD on kids but he couldn't ignore parents who all but begged him to treat their children. In January 2017, he started conducting a double-blind study so that neither he nor the parents are aware of what their children are receiving.
There are 3 possible groups:
- A placebo group
- A strain made of 20 parts CBD to 1 part THC group
- A strain of all extracts and oil together. This is testing whether it is only effective if the entire cannabis plant is used together.
Each group takes their dose, in the form of oil mixed into food, for 3 months. After that there is a 4 week break to allow the children's bodies to return to their previous state and then they are placed in a different group. Results for this ongoing study are expected in 2019.
Many children with ASD also suffer from epilepsy. Parents noticed that the CBD taken for epilepsy was also helping with ASD symptoms. There is a problem conducting clinical studies in the U.S. as marijuana is classified as a dangerous drug. However, in Israel, medical cannabis is legal. There is currently a study being conducted by Dr. Adi Aran at a large hospital in Jerusalem with 150 children and young adults. Results for this study are expected in 2019.
Would You Try It For Your Child?
Rachel was at a breaking point. She was watching years slip away as her son was growing physically but was unable to make real progress communicating or connecting with family and friends. Their family situation was extremely tense with their days and nights consumed with her youngest son's needs.
After hearing about Dr. Aran's study from a fellow mom, she signed him up. Rachel, like the other parents in the study, can see a real difference in her son's behavior. She can see a marked difference in his repetitive behaviors, ability to sleep and, most remarkably, has found him more open to interacting socially.
Based on anecdotal evidence in Israel, parents are seeing real improvements in their children who are on CBD. Even though parents don't know which strain their child is given, they can see a marked difference on the medical cannabis.
It is heartbreaking to watch your growing child unable to make real progress in communicating or interacting with family and friends. The physical and mental strain involved in parenting a child with ASD has been known to considerably impact a caregiver's mental state.
Because of this, parents of children with ASD around the world are desperately waiting for results from Dr. Eran's groundbreaking studies. Grow houses in Israel are currently developing the different strains of cannabis which they are looking forward to selling once the results are published. Hopefully the federal government of the US will allow it's children to partake in this necessary medical therapy.