WEST FARGO — There are times when 9-year-old Ronnie Johnson is calm and seemingly content. He enjoys jumping on a trampoline, swimming and playing with his five siblings.
But more often than not, his days are marked by anxiety and anger, borne out of frustration.
Ronnie, who has autism, has "rage attacks" that have become more serious as he's gotten older. His mother, Alexa Johnson, pointed to a large hole in the wall next to the stairs leading to the basement of their West Fargo home.
“He did that in just seconds because I couldn’t get to him fast enough to calm him down,” Johnson said.
Ronnie has a protective helmet, but wearing it seems almost a punishment when he’s acting out. A few months back, he gave his mother a concussion by headbutting her during a rage.
“That’s our big problem right now .... He’s getting pretty violent,” Johnson said.
Children with autism in other parts of the world who harm themselves like Ronnie have benefited from taking medical marijuana. Johnson wants to explore that option for her son, but the North Dakota ballot measure legalizing medical marijuana approved by voters in 2016 does not include autism as a condition for which it can be used.
Johnson is on a mission to change that with the help of state Rep. Ben Koppelman, a Republican from West Fargo. He’s co-sponsored House Bill 1519, which would add autism spectrum disorder to the list of debilitating conditions covered, including cancer, AIDS and post traumatic stress disorder, or PTSD.
Koppelman said the House Human Services Committee gave the bill a "do-pass" recommendation but also amended it, adding a dozen other conditions to be covered, including anorexia nervosa, endometriosis and migraine. It also stripped a portion that would have given physicians leeway in dosages for pediatric patients.
Though Johnson is concerned about the large number of other conditions added, Koppelman is optimistic. “It’s looking promising,” he said by phone from the Capitol in Bismarck on Wednesday, Feb. 13.
The bill requires a two-thirds majority approval in both the House and Senate because it would amend the medical marijuana ballot measure approved by voters.
In Minnesota, autism is one of the conditions for which medical marijuana is allowed, according to the state Department of Health.
'He started shutting down'
Besides Koppelman, Johnson has found advocates in holistic medicine and other parents with autistic children.
Gail Pederson is a family friend and a nurse with a specialty in holistic nursing, who’s a member of the American Cannabis Nurses Association.
Pederson says critics who think people are pushing for more medical marijuana access "to get high" are misinformed. Studies show improvement in some patients with just a microdose, but you don’t have that "high" or disorientation, she said.
Ardell Nelson, of Hettinger, N.D., testified before the House Human Services Committee on Jan. 23, along with Johnson.
Her son, 49-year-old Craig Nelson, also has autism and has had self-harming behavior since he was a child. He’s banged his head so often that he has a traumatic brain injury and spinal stenosis, a condition that occurs when the spinal canal becomes compressed, Nelson said.
“Piece by piece, bit by bit, he started shutting down,” she said.
Her son lives in a skilled-care facility in Grafton, N.D., and his health is deteriorating, in part due to seizures. Nelson knows medical marijuana won’t help him, but in Ronnie Johnson, she sees a reminder of how her son once was.
Craig used to swim and ride a bike, and as an adult, held several jobs. He was even able to live somewhat independently, for a time.
“I did everything under the sun I could think of to make sure he had every life experience,” Nelson said.
Johnson has read studies done in Israel where children with autism and self-harming behavior showed dramatic improvement with use of medical marijuana. Rage attacks lessened, and some were able to be weaned from the pharmaceuticals they were taking.
She wants the chance to do everything she can for Ronnie.
“There’s no righteousness from withholding good from the suffering,” Johnson said.