In the following piece, we’ll learn about the groundbreaking ION study, which uses oxytocin to help mediate the symptoms of autism.
Lisa Lewis of Toronto struggled for years to get her son’s elementary school to listen to her concerns about Jakob, now 16. “I really felt that something wasn’t right,” she explained.
The Initial Diagnosis
Around age six, Jakob exhibited obsessive-compulsive behavior and was struggling socially. He frequently argued with other children at school and had just one close friend. Lisa discussed these issues with Jakob’s pediatrician and after two long years, Jakob was finally approved for mental health testing. Given a misdiagnosis of attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD), he was placed on various medications. Lisa saw his behavior worsen.
Worsening of Symptoms
As he got older, Jakob’s grades dropped, even though he had been labeled a ‘gifted’ student since grade three. The school still didn’t understand his behavior and how it was negatively affecting him. He began cutting himself and finally approached his mom to ask what was wrong with him.
Lisa quit her full-time job to devote full attention to Jakob. Family relationships became stressed with the loss of income, but Lisa was determined to do whatever it took to help her son.
The Social Isolation
By middle school, Jakob was gaming a lot. Lisa understood that the ‘friends’ he was playing with were strangers, not normal social connections. Jakob continued to be isolated from kids his age and “saw everything in black and white,” Lisa explains. He also became unusually righteous with little need for others’ opinions.
In seventh grade, still with no friends or proper support from the school, he experienced bullying which culminated in a threat to commit suicide. “If you had asked me at that time if Jakob would one day leave home and live on his own, I would have said ‘no,’” Lisa explains. “I worried that he may not even be alive.”
Suicide Threat Leads to ASD Diagnosis
After Jakob’s suicide threat, representatives from his school worked closely with Jakob’s parents and the mental health experts who properly diagnosed him with autism spectrum disorder (ASD). This made perfect sense to Lisa but it was difficult for her family to fully absorb and understand.
The family was introduced to Kerry’s Place, a Toronto autism program which helps provide therapy and counseling for individuals on the autism spectrum and their families. With help from experts there, Lisa began searching for new ways to help her son.
The Groundbreaking ION Study
After a few months, she learned about a ground-breaking new study at a local children’s rehabilitative hospital. Called the ION study, it evaluates how behavioral therapy and the hormone oxytocin, which is naturally produced by women after giving birth, can enhance social thinking skills. She spoked with the study’s coordinators extensively and was pleased to see the minimal risk factors and the interest that the coordinators had in her son personally. The family felt comfortable and agreed to have Jakob participate. He began taking intranasal oxytocin (Syntocinon®) once a day.
ION Study Initiates Changes
Immediately, the family noticed major changes in Jakob and the improvements continued. He began to be more sensitive to the feelings and behaviors of others around him. “One day he came home on the school bus, “Lisa explains. “He was so excited to tell me about how he watched two kids on the bus talking and noticed that one of the children was becoming annoyed with the other. Noticing someone else’s non-verbal communication was a completely new thing for him.”
After taking oxytocin for six months, Jakob says that he is happier overall and has become able to “leave his head,” something that has been very difficult for him. Depression is no longer at the forefront of his mind. He has stopped having suicidal thoughts.
“Oxytocin has changed his life,” Lisa says.
Lisa has now gone back to work and Jakob is looking forward to graduating from high school and going to university, possibly to study chemical engineering. His mom takes pleasure in the fact that, like most teenagers, he is constantly on his phone texting, talking to friends and is now taking driving lessons. He enjoyed a New Years’ Eve party last year. These are things that Lisa says would have never happened before oxytocin.
ION Study Clinical Trial Eligibility Criteria:
In order to participate in this study at Rush University Medical Center in Chicago, your child must meet the following criteria:
- Between the ages of 8 and 11 years old and have a parent/caregiver.
- Have a diagnosis of autism spectrum disorder.
- Speak and understand English.
- Talk in full sentences.
Note: This is a partial list of eligibility requirements.
Please contact Anthony Burns, MA, at (312) 942-6331