Mental health is an important part of the health and well-being of the entire individual, and is an essential component of the health of society. But it’s an often overlooked part of health care. A recent report from the AJ Drexel Autism Institute at Drexel University highlights the importance of mental health care in children and adults with autism. The report, the latest in the National Autism Indicators report series, found high rates of mental health conditions in children and adults with autism and persistent disparities in mental health and health care by race and ethnicity.
National estimates, based on parental reports, suggest that three-quarters of children with autism have at least one concurrent mental health condition, including behavior or behavior problems, ADHD, anxiety and depression. And nearly half of them have at least two. This is much greater than other children with special health care needs, with at least half suffering from at least one psychiatric condition and about a quarter with one or more.
This report is a follow-up to the previous National Autism Index Report on Health and Healthcare, which found that children with autism had higher rates of several mental health conditions, were more likely to see a mental health provider than their peers and to use psychotropic medications. . And while nearly all children with autism had health insurance, fewer than half of parents reported that it covered all the services they needed for mental health. Even in comprehensive care approaches, mental health care is often not addressed.
“The findings of the previous report raised some important questions and led us to further study the role of mental health and mental health care in people with autism,” he said. Jessica Rast, a research associate at the Autism Institute and lead author of the report.
Researchers have found that what is diagnosed in children varies by race and ethnicity. Anxiety is more common in non-autistic white Hispanic children (51%) than in children of another race or ethnicity. Nearly half of white and black children with autism have ADHD, while about a third of children of another race or Hispanic children have the condition. And all cases are less common in Hispanic children, who are less likely to have any mental health condition than non-Hispanic children. Rast explained that differences in diagnostic practices are often attributed to clinician bias, structural barriers, and the historical context of racism in health and mental health care systems.
Treatment or counseling was more difficult for children with autism to obtain than their peers, with one-fifth of parents of children with autism reporting difficulty or impossibility to access required services. 12 percent of parents of children with autism reported that their children needed mental health care that they had not received in the past year.
The report also examined the relationship between mental health and community participation in autistic youth. Young people who need mental health care but have not received it are the least likely to participate in sports, volunteer work, or paid work. Young people with autism who received all the mental health care they needed were more likely to participate in those activities, even more than young adults who didn’t need any mental health care.
said Tamara Garfield, a doctoral student at Drexel’s Dornsife School of Public Health and co-author of the report.
Without proper care and management in primary care, mental health conditions can be cared for in acute settings when they escalate into a crisis situation. For children with autism in 2017, three of the most common reasons for hospitalization were mental health, including mood disorders (16%); disruptive disorders, impulse control and behavior (4%); and schizophrenia and other psychotic disorders (2%). Mood disorders were also the most common diagnosis in autistic adults aged 18 years and over (17%), followed by schizophrenia (9%).
A major shortcoming of US mental health policy and practice is the lack of a crisis care system. “People in crisis have limited options when they need immediate mental health care,” Rust said. “They can go to the emergency room where providers likely have no training to accommodate people with autism, or they can call 911 where police and other emergency responders have limited training in responding to mental health crises. Neither of these options provide quality of care that people need during a mental health crisis.”
While there are no national estimates of mental health status in adults with autism, this report used two sources of insurance information to present the findings. About a quarter of adults enrolled in Medicaid, a public health insurance program that covers children, adults with disabilities, and those below the income threshold, have anxiety, bipolar disorder, ADHD or depression identified in their medical records — a much larger proportion of adults who do not have wading. Similarly, about a quarter of adults with autism who are registered with Kaiser Permanente Northern California (KPNC), a private insurance company that covers people in Northern California, have more anxiety or depression in their medical history, than their non-autistic peers.
“We need to ensure access to mental health services for individuals across the autism spectrum – when, how and where these services are needed. Data from this report provides important information for structuring policies and practices to make these required services readily available to individuals with autism over a lifetime,” Lindsey Shea, Dr., director of the Center for Policy and Analytics and chair of the Life Cycle Outcomes Research Program at the Autism Institute, and associate professor and co-author of the report.
There are many areas of care that could be improved to meet the needs of the autism community. Rast added that access to mental health care — from insurance coverage, the availability of providers and telehealth, to how individuals are introduced to the specialty — is very important.
“This problem is made worse in racialized societies, where historical underinvestment, mistrust of the medical system and the importance of treatment make care less effective,” Rast said. Furthermore, the mental health workforce is disproportionately white. Care from caregivers of the same race may add a cultural competence to care that is lacking in much mental health care.”
However, the success of current mental health practices for autistic patients is sometimes unknown. Many of the practices that have proven effective in research studies with the general population have not been studied in people with autism. More research is needed to determine the most effective mental health care practices for autistic patients.
All of these changes will also positively impact mental health in the United States in general. Meeting the needs of a population often requires policy changes that affect access to care, caregiver training, and resources for all.
In order to begin building a more complete picture of mental health and mental health care, the report gathered several data sources, as well as Medicaid and KPNC databases. The national estimates of child health came from the National Survey of Children’s Health. National estimates of hospital stay information for children and adults came from the national inpatient sample. The combination of several data sources has helped build an emerging picture of mental health over the course of life, as there are no publicly available sources of national data examining the mental health of adults with autism.