The medical practice of music therapy has been around for years and has helped countless people including Alzheimer’s patients, children on the autism spectrum, and veterans suffering from PTSD. However, new research and new technology are changing the practice, as music therapists discover inventive ways to help their patients. For Josh Berkau, a seventeen-year-old from Evansville, new trends in music therapy have provided him with a new lease on life.
“I feel like I am beginning to have a life.”
– Josh Berkau
In many ways, Josh is much like your average 17 year old. According to his mother, Cami Berkau, “he has the same feelings as a seventeen-year old, he talks about hot girls.”
He’s also curious and gets excited about learning. He cares deeply about helping others. Cami shared that Josh’s philosophy in life is “if it helps somebody else, I’ll do it.”
His faith also plays an important role in his life, and that drives his career goals as well. When asked what he wanted to pursue as a career, he replied “I want to be a missionary in Mexico.”
The difference between Josh and most seventeen-year-olds is that when Josh communicates the words “I want to be a missionary in Mexico,” he had to use the text-to-speech software on his iPad. Josh himself is non-verbal, one of the issues that’s caused by his severe autism spectrum disorder.
The voice from the iPad is a fairly recent phenomenon for Josh. He’s only been using it for about 6 months. Prior to this, he had no other means of communication.
The text-to-speech software that renders Josh’s words can sound harsh and robotic. But it’s hard to overstate the positive impact that it’s had on him and Cami.
“This has made such a difference,” Cami said. “This morning when he got up—I knew something was wrong. I was able to ask him, ‘what happened?’ and he typed out–it was really hard for him–but he typed out ‘had seizure.’ For us, to be able to give that information to the doctor when I called him is life-changing.”
Josh was diagnosed with autism at the age of 3, but his health troubles began much earlier. He was born with a low body temperature and low blood sugar, and he was in and out of the hospital for the first few years of his life, after having trouble with ear infections and feeding. Once his family learned about the autism diagnosis, they were quick to try different therapies.
“When he was diagnosed, I didn’t waste any time,” Cami said. “We got him into a preschool for developmental disabilities. And we wanted extra, so we tried horse therapy. We tried dolphin therapy.”
Cami kept doing her research and learned about what was working for others. Some of the treatments included changing Josh’s diet to the GFCF diet or the gluten-free, casein-free diet, trying different vitamins and supplements. They even tried stem-cell therapy and auditory therapy. None of the treatments were working.
“We took him to Texas for some biomedical treatment,” Cami said, “because a lot of our friends had had some success with that.”
In addition to being non-verbal, Josh’s autism has made it difficult for him to control his movements and his behavior. He’s in constant motion and his behaviors are often extreme, which has put him at risk of injuring himself in the past. He sometimes refers to this as his “bad body.”
For six years, Josh tried ABA therapy, or Applied Behavior Analysis, to help combat some of these extreme behaviors. In ABA therapy, he learned what kinds of behaviors were acceptable and what kinds were not. The therapy was intense, Josh would often get frustrated, but there was some minor improvement.
According to Cami, “he was doing better at at least getting his behaviors a little bit under control. But he still had no communication. And that was our one thing, we were trying to get communication.”
Without communication, it meant that there was no way for Josh to let others know his wants and needs, which can be dangerous. For instance, he couldn’t tell his mother or his doctor if he were in pain.
But it also meant there was no way for people to know who Josh was, or if he could even understand them at all.
Trying Music Therapy
When Josh was about 7, he tried music therapy with Casey DePriest, who works now as a neurologic music therapist for Integrated Music Therapy
At first, music therapy seemed like any other kind of therapy. Casey initially tried some standard music therapy techniques, ones that would help Josh’s cognitive skills.
“We might do a song about a particular color,” Casey said, “and as we were singing about the color, we might get him to identify a picture of that color or item that is that color.”
However, as the lessons went along, something seemed to click between Casey and Josh. He was more motivated to work on the therapy. The music seemed to help him focus. Casey was also determined and dedicated to help.
The work though was, according to Casey, at a very low level and not age appropriate. Their lessons were “where we as a team, his therapists, his teachers, his parents, felt like he was developmentally,” Casey said.
Without any way for Josh to communicate, it was hard for Casey, or really anyone else in his life, to gauge his cognitive capacity. Many assumed that he was functioning at a Pre-K level.
Neurologic Music Therapy
Then about three years ago, Casey started training in neurologic music therapy, a practice that focused on the way music can affect the brain.
Her study of neurologic music therapy changed some of her ideas about the nature of autism. She learned that individuals with severe autism really are affected by a movement disorder, rather than a social or communication disorder.
This movement disorder could also account for Josh’s inability to speak, since speaking is strongly involved in our motor process.
According to Casey, she also “started to learn from them the need to look at individuals through an assumption of competence,” rather than assuming that Josh was functioning at a lower level because of his inability to communicate.
She began to focus on more movement based techniques, especially ones that involved rhythm. This included cross-midline drumming, or using your right hand to play a drum on the left side of your body and vice versa. This helps builds pathways across the hemispheres of the brain, helping to strengthen coordination.
The steady rhythm of the rhythmic-supported movements that Casey used in her treatment helped to organize Josh’s body.
The rhythm practice also fed into a new technique: supported typing. This is where the iPad comes in. Casey thought that if she could use these music therapy techniques to get Josh to control his body enough to type, she could finally get him to communicate.
Supported typing, which comes out of Syracuse University, means providing a certain pressure and certain physical support to the hand. Casey said that the physical connection helps to “make a neurological connection between the hand and the brain of the person that is communicating, so that they can use their hand in a way to type out those thoughts they are having.”
At this point, they weren’t sure what kinds of thoughts Josh would have, or if he would have many thoughts at all. But as it turns out, Casey’s assumption—that Josh was competent—was correct.
Not only did Josh have thoughts of his own, but as he puts it, “I learned that there are some people not ready for me to have an opinion.”
“He immediately caught on and immediately was able to tell us what was inside of him,” Casey said, “and so that was just an incredible breakthrough.”
Everyone else in Josh’s life could now access his thoughts. Josh finally found his way to communicate.
The ACCESS Academy
Josh’s breakthrough has also transformed Casey DePriest’s entire practice as a music therapist. She’s now opened her own school in Evansville, the ACCESS Academy. ACCESS is an acronym which stands for “Assuming Competence Can Ensure Students’ Success.”
The school, which just started a summer pilot program in June, uses neurologic music therapy and supported communication to help others in Indiana like Josh.
Casey said that they are already seeing “amazing outcomes.” One student communicated with her that ACCESS Academy was “miraculous and victorious.”
Josh was most eager to talk about his treatment experience. “I tried many different treatments like ABA and stem cells,” he said. “They could not help my body like music therapy.”
The typing is a laborious process for Josh. It takes intense concentration to control his movement enough to type, and one sentence can take several minutes.
As Josh puts it, “my feelings are often misunderstood. My body needs help help to communicate everything that I need to say.”
He continues working on supported typing outside of his sessions with Casey, often with his mother. But as Cami puts it, without the rhythmic component, the communication becomes more difficult.
“He will tell me when I’m not doing it right,” Cami said. “I’ve gotten better now.” But as she describes, Josh has had trouble in the past because, according to Cami, “I didn’t have enough rhythm.”
Despite its difficulty, Casey’s work has opened completely new doors for Josh, giving him more access to school, an ability to interact with others, and a chance at achieving his own goals in the future.
“He has basically a whole new life ahead of him,” Casey said, “because he has been able to find a way to communicate the competent brain that he has, and the competent thoughts that he has.”
When I asked how he felt about music therapy, Josh responded, “music therapy gave me a voice so I could learn like other kids. I love music therapy.”
The breakthrough excites him, not just because of the opportunities he now has, but because he knows that now, others like him may also find a way to communicate. At the end of our interview, when I asked if there were anything else he wanted to share, he only wanted to say, “I want other kids to find their voices.”
As Josh is learning more about his own voice, Casey is also learning more about who Josh is.
“I guess what surprised me most, and it’s embarrassing to say it honestly, is how much of him I was missing,” she said. “I always knew he was ‘in there,’ so to speak, which is how Josh describes it, interestingly enough. But I had no idea what an incredible person he is. I had no idea how empathetic he is for other people. I had no idea what his real, true interests were. I had no idea his amazing cognitive abilities. Everything that I was trying to teach him over the last several years, he probably got the first time.”
Perhaps Josh himself puts it best: “I feel like I am beginning to have a life.”