An Inspiring Testimonial of a Family Working Through Autism with the Help of Cannabis
“Our son was a healthy, beautiful baby boy and met every milestone without an issue, until about 13 months old.
After turning a little over a year old, he started becoming very picky about foods. Within 5 months, he was down to accepting only 3 different foods. As his eating became more restrictive, he also stopped using the 15 or so words he’d been saying most often. The first noticeable word to stop was “mamma”. At about 15 months old, he started having staring spells. We were unable to wake him out these until we physically touched his face. At this time he also stopped eye contact and responding to his name.
We continued reporting all of this to his pediatrician. She ordered an MRI to rule out a brain tumor and a hearing test under anesthesia that would read his brain activity. The results were normal for both and he was then evaluated for autism. We received a diagnosis for autism spectrum disorder and avoidant restrictive food intake disorder (ARFID) on September 28, 2017. He had just turned 2. The doctors explained that it was a regressive form of autism. We received a list of therapies and recommendations and it was then up to us to coordinate and put into place for our son.
As we learned what autism was, he continued to restrict his eating to one food. His staring spells increased in frequency and he was completely nonverbal. As we attempted to communicate with him or sit next to him, he would move so that he was facing a wall to avoid any interaction at all. The more we tried to communicate and do typical toddler things with him, the more agitated he’d become. His symptoms worsened and he refused food completely. He was unwilling to sit and spent his days circling and spinning. His obvious, constant fight or flight mode made it impossible for him to function at all.
2 weeks after his diagnosis, he refused to eat for 7 days. The doctor’s proposed a plan to hospitalize him, do testing under anesthesia and place a feeding tube for the long term. We decided we wanted a less traumatic route for him. We wanted to see what therapeutic approaches could offer before agreeing to invasive medical procedures. He began having seizures soon after his diagnosis. The staring spells were explained by his neurologist to have been precursors for the seizures. He experienced 5 seizures within the next 3 months.
In the months that followed, we tried several approaches to address his feeding. Austin’s sensory system was so heightened that the sight of particular foods would cause him to vomit. We could not eat as a family. We could not eat in front of him. We could not cook. The smell of food cooking would cause him to gag. My husband and I asked about possible appetite stimulants to help him. The pediatrician agreed and we started him on an antihistamine with a side effect of appetite stimulation. He was never able to verbalize if he was experiencing any of the other side effects but became too exhausted from the medication to attend to therapy sessions. According to the doctors, there were no other options – No other medications to try for his age. He was willing to eating only one type of homemade puree, once or twice per day if we were lucky. His hunger was not consistent. He did not sit for meals. He wouldn’t eat spoon-fed from anyone other than myself. He wouldn’t eat anywhere but at home, while he was playing and running.
Our lives became completely consumed by our son’s autism and feeding disorder. His therapy sessions were providing little to no benefit since he would scream, tantrum and self-injure nonstop from beginning to end. In addition to the feeding difficulties, he had extreme difficulty with routine changes, new environments, sensory overload, transitions that are as simple as changing rooms or getting into the car, control and OCD tendencies. We were unable to leave the house. We lived in complete isolation.
It was at this point that we were frantically searching for an option that could help our son. We decided to reach out to friends who had also experienced dire circumstances with their children. It was from that network of parents that we began to research about the possibilities of medical marijuana.
After intense research and carefully considering all our options, we decided to try it for our son. We started at the most miniscule dose possible and gradually increased. We did not see any changes in his symptoms for the first 2 1⁄2 months or so. At about the 3-month mark, he began to initiate and maintain eye contact. He followed direction. His awareness and focus were obvious to every therapist working with him. He has 6-7 therapists at any given time. Every single one asked what was different. He was completing his all of his (aba) sessions with minimal tantrums and protests to demands. He was able to engage in a leapfrog game and pause to attend to aba tasks. He was essentially, multitasking.
For the first time in almost a year, we were able to interact with our son. We could see how he physically slowed down enough to be able to process the environment around him. He was able to go outside without a hat or sunglasses to protect from the discomfort of the sun and wind. He was able to go on the swing set in our backyard and enjoy it. He stopped spinning long enough for us to attempt to play with him, show him a book, and stack blocks. We could finally see that he was experiencing a sense of lessened anxiety that allowed him to function and process the language and activity around him.
He was finally able to sit down. His staring spells and seizures subsided completely.
We have ensured our son has had every beneficial therapy possible. He attended an inpatient feeding program for 6 weeks using a gentle SOS approach. At this time, he was also diagnosed with anxiety disorder.
It has only been a year since starting cannabis. Our son initiates meals when he is hungry. He has a very structured meal schedule. We eat dinner as a family every night. He is able to tolerate the sight, smell of food, and visual of others eating in front of him. He is able to try new foods when he feels ready. He is able to tolerate store trips, family restaurant outings and family events like birthdays and cookouts. He attends pre-school in an integrated classroom. His teachers have noted that one of his biggest strengths is his awareness. He watches and learns from the typically developing peers in his class. He imitates, pretends and is now pre-verbal. He is able to use his communication device fluently. He signs and approximates words to indicate his needs to us. He is now able to play with his sister. He initiates tag and hide and seek.
The progress that our son has made over the past year has been immense. We are no longer isolated to the house. He is working hard everyday to adapt to a world that overwhelms him. Cannabis has helped him to be able to continue making progress in learning basic daily skills. It has helped him be able to develop the coping skills necessary to face every day. Our experience with cannabis has proven to us that, in our son’s case, it has been a key factor in helping us achieve what we consider to be most important for our son – that is, being as happy and as functional as he can be. We have all experienced an improvement in our quality of life as a family.
We share our story with the hope that our experience with cannabis will give courage and hope to another family that may be going through the heartbreaking reality that is autism.”
Liz D.
An exciting 12/20 Update!
“Everyone has been happy and healthy here. Or son is remote learning from home. He operates best when he’s healthy so we have to keep him that way for now. Peer relationships will have to wait until another time unfortunately. He plays well with his sister, thank God. I’m happy to tell you that this pandemic has provided a silver lining – a slower pace at home has given him a chance to lower his anxiety to a point where he is doing amazing.
Cannabis therapy is still helping him when we know that he will experience an increase in anxiety I.e. doctors appointments, impulsive behaviors, etc. We can see that we can decrease the dose now that he’s developed so many skills on his own (thanks to Cannabis) -dressing, bathing, increased verbalization, less anxiety around foods. He is still seizure free. In his calmest moments, we can teach him coping skills, deep breaths, using his speech device to communicate his needs more and his academics. Academically, he is doing all of the average kindergarten skills – he’s writing his name, recognizing sight words, knows ABCs, counting, letter sounds etc. He said “daddy” for the first time two weeks ago. My husband had a moment lol. As his feeding, verbalization, and behavior skills improve, cannabis becomes more of an option (as long as seizures don’t return). Our hope is still that his body will reach full homeostasis and our boy will be happy and healthy without any need for pharmaceuticals.
Dr. Eric Ruby is a Pediatrician who advocated for Pediatric use of Cannabis after seeing it used successfully by his own son. He helped many children and families navigate in this new territory. We owe him a debt of gratitude for his willingness to forge ahead using cannabis for pediatric patients. As he has recently retired, Dr. Ben Caplan of CED Clinic in Chestnut Hill has taken the baton. Click here for more information about the pediatric program and becoming a patient or caregiver.