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 City, told Medscape Medical News.
“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,” 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.
Patients who receive their initial ASD diagnosis in adulthood face even greater challenges, including a significantly higher risk for suicide and self-harm than those who are diagnosed as children.
Before 2020, there were no national data on the number of US adults with autism. That year, the Centers for Disease Control and Prevention (CDC) 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 Medscape Medical News.
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 US children diagnosed with ASD. It was inexact, said 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 “there just aren’t enough services and research on adults on 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 Medscape Medical News.
Founded by Brodkin in 2013, the program provides ASD diagnostic and support services for adults with ASD. Like others in the field, 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 males.
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 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, Li said it’s the data on adults that was most alarming.
The odds ratio (OR) of suicidality in children was 2.53; but the risk in adults was significantly higher, with an OR of 3.84.
Adults were at greater risk for self-harm than children (OR, 1.45; 95% CI, 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?
Dr Brenna Maddox
Commenting for Medscape Medical News, 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 these findings won’t be surprising to many who work in the field.
“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 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,” 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.
Scaling the “Services Cliff”
While Maddox’s study could yield a potential suicide prevention tool, she is quick to note that the ultimate goal would be to have fewer people reach the point where such a tool is needed. However, that will take a multidisciplinary approach that begins with access to clinical care, including mental health care, she noted.
“Our mental health care system in general is not great for people on the spectrum but it’s even worse for adults,” Maddox said.
Compared with neurotypical adults, adults with autism use more mental health services, have higher hospitalization rates, and are more likely to use primary care services, one recent study showed. The problem, Maddox notes, is that there are too few clinicians in those areas who are trained in autism care.
One way to address that issue is to mandate autism instruction in the medical curriculum, Catherine Lord, PhD, told Medscape Medical News when asked for comment. Lord is co-chair of The Lancet commission on the future of care and clinical research in autism and professor of psychiatry at the Semel Institute for Neuroscience and Human Behavior at UCLA in Los Angeles.
“Medical schools offer very little training on ASD, even in standard psychiatry training. For people who don’t specialize in child or adolescence psychiatry, there’s almost none,” Lord said.
Maddox agrees. One goal of the PCORI study is to turn their findings into a transportable training program, perhaps available via a webinar for clinicians, crisis center staff, and others who may encounter an adult with autism who is contemplating suicide.
“This is a life and death situation,” Maddox said. “We have to marshal every resource we have, and we have to do it now. We can’t waste time.”
Li’s study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health. Study authors and other sources reported no relevant financial relationships.
JAMA Netw Open. Published online October 19, 2021. Full text
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