Nov. 26, Neely Myers, professor of anthropology at SMU Dallas and adjunct associate professor of psychiatry at UT Southwestern, for a commentary about the need for families and community stakeholders to identify psychotic youth and help them find treatment before they cause harm to themselves or others. Published in the Dallas Morning News under the heading Young psychosis patients need early intervention: https://tinyurl.com/39a99zkf
Michael remembers the episode very clearly. So does his sister.
“I would think my family was trying to kill me … I was thinking I was Jesus,” Michael said. “It made Mom really depressed,” his sister Liza added, “because she did not know how to help him.”
This is unfortunately not so rare. Every day in the U.S., up to 900 people under the age of 25 experience the onset of first episode psychosis, which can lead to schizophrenia and long-term disability without effective early interventions. On average, a young person will wait 3.7 years after their symptoms start before they get treatment.
Too often families shun treatment until it’s too late
By Neely Myers
Michael remembers the episode very clearly. So does his sister.
“I would think my family was trying to kill me … I was thinking I was Jesus,” Michael said. “It made Mom really depressed,” his sister Liza added, “because she did not know how to help him.”
This is unfortunately not so rare. Every day in the U.S., up to 900 people under the age of 25 experience the onset of first episode psychosis, which can lead to schizophrenia and long-term disability without effective early interventions. On average, a young person will wait 3.7 years after their symptoms start before they get treatment.
Michael, a fictitious name used to protect his privacy, was just one of the 47 youths my SMU Dallas research team spent time with from 2014 to 2017. As trained psychological anthropologists, we recruited this group to investigate why about half of young people like Michael refuse follow-up mental health care after an initial emergency hospitalization. Research indicates there is a critical periodfor pre-emptive treatment after a “first episode” of psychosis; delays getting help and refusals of care jeopardize one’s chances of a full recovery. Why would anyone say no to help?
To answer this question, my team and I spent time in one hospital emergency room for several days each week for two years. We engaged with young people from diverse backgrounds as they arrived with early psychosis symptoms. With consent, we then met with them and their families in their homes and communities for up to a year.
We found that without early intervention, kids like Michael had often started down a perilous path from which it became harder and harder to return. Self-soothing with drugs and alcohol to “feel better” and fit in sometimes made their symptoms worse. Isolating from friends to avoid confusing or disappointing them only heightened their anxiety about and the intensity of their unusual ideas. When things reached a breaking point, they became dangerous to themselves or others.
Engaging early in coordinated, specialized forms of treatment can prevent self-harm, substance misuse, homelessness, failures with educational and vocational goals, and interpersonal violence, but this is not something most young people or their families know about or understand. Everyone just wants to get back to normal.
Even though Michael’s family included multiple health professionals, they waited three years after his symptoms began to seek help. They watched quietly as their top student and star athlete dropped out of college, hid in his room, and slowly sank into an unrecognizable state. They rationalized that maybe he was smoking too much cannabis, or spending too much time alone, or not eating enough — all true. However, Michael was just trying to manage his mental confusion.
“Imagine you just being normal one day, and then it’s like somebody is taking control of your mind, and it’s like your mind is holding yourself hostage,” he explained.
Michael’s family eventually had to call police when he tried to harm his sister’s toddler during a family gathering. This kind of dangerous behavior happens often because people wait too long to get help — not recognizing and accepting that there is a mental health issue.
Liza later despaired, “We didn’t know it was. … No one in our family has ever had…” She could not even say the words “mental illness.”
Many of the youths in our study became dangerous to themselves or others, but waiting until someone gets aggressive enough that you have to call the police is not good for anyone.
Mental health or behavioral issues are associated with 23% of all police shootings, but fortunately, Michael was safely escorted by police to the emergency room and admitted involuntarily. He was then sent on to the state psychiatric hospital where nearly a month of treatment cost as much as a year of the college he had been attending.
His family was devastated, rejecting both Michael’s new psychiatric label of “schizophrenia” and the medication prescribed to treat the condition. Michael also did not like the side effects. So, Michael went home but stopped taking medication. He went back to his room, fearing for his future. He felt he was not the editor of his own life — he could not respect himself and did not imagine others respected him. Looking back at his Facebook posts from a few years prior, he shared, “It seems like the real me, but I just don’t know who that person is.” He felt stuck.
After six months my team did not hear from Michael again. He never saw a therapist, dropped out of treatment, and refused medication. Up to half of the young people referred to treatment for early psychosis, like Michael, do not see further mental health treatment as a way forward.
Helping young people like Michael must start with preventing delayed care and improving crisis prevention and management. Here are three actions families and communities must implement.
First, the more people who can recognize warning signs and encourage families to ask for help, the better. Families and caring adults who work with young people (e.g., coaches, youth pastors, librarians) need to know how to gently recognize and address signs of serious mental health issues well before the young person becomes dangerous. A free, daylong, virtual course like Mental Health First Aid can help. For help, specialty treatment sites can be contacted directly.
Second, everyone needs to know that ADHD medications and cannabis can help you feel better, but in higher doses, they can also make things worse — especially for people developing early psychosis. Prescribers of ADHD medications must regularly screen young people for psychosis symptoms to avoid exacerbating problems when they arise. High-potency cannabis can also be psychotogenic, which is something more people need to recognize. Medicines can be helpful and harmful, and we all need to know how to use these really common ones for young people responsibly.
Third, we need to build safe alternatives to long-term hospitalization. These will be more socially and economically beneficial — and likely less damaging to one’s tender, adolescent self-esteem. Peer respite centers or crisis support centers are in a house-like setting and staffed by trained people who have themselves experienced mental health conditions can help youths and their families see what recovery looks like and better understand how to get there. They are also less expensive than the hospital. Hospitals would ideally be a last resort, not the frontline, in an emergency.
Youths struggling with psychosis need early support and care that empowers them to have at least some control of their own lives so that they can continue to respect themselves and secure the respect of others. We must connect youths struggling with psychosis early and then offer care that empowers them to have at least some control of their own lives and encourage them to continue to respect themselves and secure the respect of others. This way, breaking points can instead become turning points that get the young person back on the pathway to becoming beloved adults.
Neely Myers is a professor of anthropology at Southern Methodist University and adjunct associate professor of psychiatry at UT Southwestern. She is the author of the new book, Breaking Points: Youth Mental Health Crises and How We All Can Help (University of California Press, 2024). A free, downloadable PDF of the book is available.