Navigating Autism: A Mother’s Story of Resilience

Amber Boyer spent early mornings last spring crawling out of her bedroom window and into her garage to prepare breakfast and gather medications for her then 14-year-old son Davin. She would put on a rugby-style helmet to shield her head and hair when she returned to her Kay County home to serve Davin his meals. Davin has autism and a speech delay. For the last year, he’s had increasingly aggressive behaviors, Boyer said.

Davin started complaining about headaches in 2022. He needed sedation for any medical testing to figure out why the headaches were happening, but few doctors in the state perform sedation before procedures like an MRI, making it nearly impossible to find care.

Davin’s aggressive behaviors escalated; he began biting, pulling hair, and breaking doors. By early 2023, he was suspended from public school for several days and eventually refused to attend. Boyer took off almost four weeks from work to stay home with him while searching for treatment. When Davin posed a serious threat to himself or others, she brought him to the emergency room. He visited emergency rooms seven times in six months.

As his behavior worsened, Boyer moved her teenage daughter to her parents’ home and eventually took medical leave from work. She spent her days making calls to mental health providers, doctors, and the Oklahoma Autism Network, trying to find someone who could help.

Boyer could only stay inside her house at night while they both slept—her behind a steel-plated door. From the garage, she watched Davin through cameras to ensure he was safe.

Davin has been on Oklahoma’s waiting list for developmental disability services for around a decade. Boyer has relied on private insurance and Oklahoma’s Medicaid program to help pay for his care in the meantime.

Struggling to find care is common for parents of a growing number of kids with dual needs, or an intellectual or developmental disability alongside a mental or behavioral health challenge. Demand for mental and behavioral health care has spiked amid a staffing shortage, leaving some children with complex needs behind as providers select clients. While the state has increased spending on mental health care and developmental disability services, it hasn’t been enough to expand services or adequately serve youth with dual needs.

Without better access to care, advocates say children are more likely to become involved with the child welfare or criminal justice system or be sent to costly out-of-state facilities. In the 2023 fiscal year, Oklahoma spent over $5 million to send 49 kids out of state for treatment.

Oklahoma has had limited mental and behavioral health services for youth for decades. Oklahoma has child and adolescent psychiatrists in just nine counties. The limited resources have forced communities to rely on public schools to provide significant on-site services, but special education programs are often short-staffed and underfunded.

Davin’s public school struggled to hire qualified professionals in the rural area and keep up as his care needs escalated. A special education teacher warned him that she would file assault charges against him. By May 2023, Davin hadn’t been to school in about two months.

Sara Coffey, a child psychiatry consultant, frequently sees families with children who lack adequate day-to-day services. “That’s whenever they come to see me — when it gets to a point where the child, quite frankly, is older and might be larger, and there’s increased safety concerns.”

Getting services early can be critical for a child’s stability and future independence. Without adequate levels of care in schools or the community, families may take kids in crisis to emergency rooms, but longer-term treatment options for kids with complex needs are almost nonexistent in the state. When Davin was home full-time, Boyer reached out to the Oklahoma Human Services’ developmental disability services office but never heard back.

Last June, Boyer took Davin to another emergency room in Oklahoma City. Although he was admitted for several days and a doctor adjusted his psychiatric medications, he was discharged without new diagnoses or medical testing. The hospital advised scheduling a follow-up with a psychiatrist and provided a letter stating that Davin required long-term placement.

A lack of providers equipped for complex needs makes it difficult for families to find the care their children require. Providers often feel unequipped to handle aggressive behaviors and decline to take on those patients. Oklahoma’s system has been set up to treat psychiatric needs separately from developmental disabilities, complicating access to care.

Boyer found an out-of-state facility that could accept Davin in August with the help of a therapist. The facility has onsite nurses, behavioral therapy technicians, and a daily special education program. Davin’s behaviors have decreased significantly, and he’s actively engaging in schoolwork for the first time.

To address the state’s mental health needs, the Oklahoma Legislature has invested hundreds of millions of dollars in recent years to expand and build new facilities. A new behavioral health hospital for youth is expected to open in Oklahoma City in late 2026, offering 72 beds for short- and long-term inpatient stays.

“Everybody knows that it’s an underserved population, and I think everybody wants to do all they can or more than they’re doing now,” said Eric Sachau, director of administrative services for Parkside Psychiatric Hospital in Tulsa.