When a recent study from Columbia University reported that suicide and self-harm were nearly four times more likely in adults with autism spectrum disorder (ASD) than in the general population, the findings were sobering. But to many in the field, they were not surprising.
Previous analyses showed individuals with ASD were up to six times more likely to attempt suicide and nearly eight times as likely to succeed. However, the recent study published in JAMA Network Open is one of only a few on self-harm and suicide in autism spectrum disorder (ASD) to include a focus on adults.
“Previously there was relatively little information about adults with autism in general and on injury risk among adults with autism specifically,” study investigator Guohua Li, DrPH, MD, professor of epidemiology at Columbia University Mailman School of Public Health, New York, told this news organization.
“How to continue to provide social support and health care services to adults with autism presents a real challenge to society and is a public health issue,” Dr. Li said.
Falling off a ‘services cliff’
The ASD rate among children is at a record-high in the United States, which means the number of adults on the spectrum will also continue to climb. The incidence of adults with newly diagnosed ASD, who are sometimes described as the “lost generation,” is also increasing. Despite these realities, adults with ASD remain largely underserved and understudied.
The data that are available paint a concerning picture. Adolescents with ASD face a “services cliff” as they transition to adulthood and fall into a landscape with a serious lack of services, support, and clinicians trained to treat adults with ASD.
Compared with young adults without ASD, those on the spectrum have significantly lower college graduation rates, have a harder time finding and keeping a job, are more likely to have a co-occurring mental illness, and are far less likely to live independently.
Before 2020, there were no national data on the number of U.S. adults with autism. That year, the Centers for Disease Control and Prevention released its first-ever report on adult autism prevalence, estimated to be 5.4 million.
That figure is almost definitely low, Matthew Maenner, PhD, autism surveillance team lead with the CDC’s National Center on Birth Defects and Developmental Disabilities, told this news organization.
Researchers use school and medical records to calculate child ASD rates, but counting adults with the disorder is far more difficult.
The CDC’s estimate was based on modeling reports from 2017 state-based population and mortality records and parent-reported survey data of U.S. children diagnosed with ASD. It was inexact, said Dr. Maenner, but it was a start.
“There are no good data on the prevalence of autism in adults. Anywhere,” he added.
Masking and camouflaging
Only about 3.5% of published studies on autism focus on adults, one review showed. In the recently published “The Lancet Commission on the future of care and clinical research in autism,” the section on research on adolescents and adults was a mere 189 words long.
“The brevity of this paragraph reflects the little data available in this area, not its importance” the authors write.
The recent report of higher self-harm risk in adults on the spectrum offers further evidence that “there just aren’t enough services and research on adults on [the] autism spectrum,” Edward S. Brodkin, MD, associate professor of psychiatry and director of the Adult Autism Spectrum Program at the University of Pennsylvania Perelman School of Medicine in Philadelphia, told this news organization.
Founded by Dr. Brodkin in 2013, the program provides ASD diagnostic and support services for adults with ASD. Like others in the field, Dr. Brodkin has noted a sharp increase in the number of previously undiagnosed adults seeking evaluation for possible ASD.
Many of his patients have recently diagnosed children and realized they share some of the same ASD symptoms. Others have long recognized traits common in autism but have engaged in what clinicians call “masking” or “camouflaging.” This is particularly true in women, who are diagnosed with autism at far lower rates than men.
The “lost generation” of adults who receive an ASD diagnosis later in life have a lower quality of life, studies suggest, and have the highest risk for suicide among all individuals with autism.
The recent study from Dr. Li and colleagues offers new evidence in both children and adults. But although the systematic review and meta-analysis of 31 studies showed high rates of self-injurious behavior and suicidality in both groups, Dr. Li said it’s the data on adults that was most alarming.
The OR of suicidality in children was 2.53, but the risk in adults was significantly higher, with an odds ratio (OR) of 3.84.
Adults were at greater risk for self-harm than children (OR, 1.45; 95% confidence interval, 1.04-2.03), with higher odds of self-injurious behavior (OR, 3.38; 95% CI, 2.54-4.50) and suicidality (OR, 3.84; 95% CI, 2.78-5.30), compared with children (OR, 2.99; 95% CI, 1.93-4.64 for self-injurious behavior, and OR, 2.53; 95% CI, 1.70-3.76 for suicidality).
Lightbulb moment?
Commenting for this news organization, Brenna Maddox, PhD, assistant professor of psychiatry at UNC Chapel Hill and co-chair of the American Association of Suicidology’s Autism and Suicide Committee, said “the sad reality” is that these findings won’t be surprising to many who work in the field.
Dr. Brenna Maddox
“But for some clinicians and the public, this will be a lightbulb kind of moment, increasing awareness about a problem many of us have been talking about for a while,” said Dr. Maddox, who was not involved with the current research.
In January, she launched a 5-year, $9 million study to compare the efficacy of two suicide intervention programs in adolescents and young adults with autism.
The interventions use a well-known suicide prevention tool that has been newly modified for use in people with autism. One program would rely on the intervention alone, and the other would add a structured clinical follow-up.
“There has to be much more than awareness. We need more training for clinicians, we need more tools, we need to know which tools are going to work,” Dr. Maddox said.
Her new project could address all of those needs. Funded by the nonprofit Patient-Centered Outcomes Research Institute (PCORI), it will train 150 clinicians at centers in four states to identify suicidal risk among young adults with autism, utilize the prevention tool, and collect data on its efficacy alone or with follow-up.
Clinician training will begin this spring, and researchers hope to have the first patient data in the fall.