Approximately 1 in 59 youth in the United States are autistic. Although the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) categorize autism as a developmental disorder, advocates say autism is not a disorder that needs to be treated, cured, or prevented-instead it’s a form of neurodiversity that should be accommodated. Considering that the mortality risk for autistic individuals is twice that for neurotypical people, Boston University researchers are turning their attention to a critical window of time that sets the foundation for an individual’s health down the road: the transition from adolescence into adulthood.
Emily Rothman, a BU School of Public Health professor of community health sciences, is leading research aimed at improving interventions and services that can help autistic youth grow up to lead healthy adult lives. From two earlier studies she conducted with funding from the NIH, investigating how young people with autism thought about and experienced dating relationships, Rothman discovered that parents and healthcare providers of adolescents with autism are seeking more information about underage alcohol use, its impacts, and what prevention strategies are effective. To fill that gap, she’s secured two new NIH grants totaling nearly $1 million and is now embarking on new research to examine underage alcohol use and peer relationship behavior among young people with autism.
The grants, from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and the National Institute of Mental Health (NIMH), will enable Rothman to gain a deeper understanding of the age-specific challenges that autistic adolescents and young adults experience, as well as the types of interventions that are needed to prepare this population for the healthiest possible transition into adulthood. She will conduct both studies with Laura Graham Holmes, a postdoctoral associate in community health sciences at SPH.
“The assumption for too long has been that autistic adolescents and young adults don’t use alcohol,” says Rothman. “Some people have conjectured that autistic youth tend to be ‘rule-followers,’ or pointed out that some may not have the capacity to go out. Others believe that autistic people perhaps don’t have friends and aren’t invited to parties or bars, or [that they] take medications that necessitate alcohol abstinence. Each of these [assumptions] could be correct, but we just don’t know to what extent this is true [or not].”
Previous studies show that autistic adolescents typically encounter challenges with social isolation, fewer health services, and difficulties finding employment, as well as harassment and manipulation. Furthermore, the negative treatment that autistic youth often receive can directly impact their risk of depression, anxiety, and self-harm, says Rothman.
For the NIAAA project, Rothman aims to fill gaps in knowledge on underage alcohol use by autistic adolescents, including why and how they consume alcohol, the context and consequences of their alcohol use, and whether those factors vary in comparison to alcohol use among neurotypical youth. She says it’s possible that some autistic adolescents may be at greater risk of consuming alcohol and exhibiting other adolescent risk behaviors because of the ways in which they are socially vulnerable.
For the NIMH study, Rothman’s team will interview autistic youth, as well as their parents, healthcare providers, and experts who work with autistic youth, to gain insight into the relationships beyond dating-looking at how young people with autism connect and interact with friends, classmates, coworkers, and roommates. The researchers will also assess the experiences that autistic adolescents may have had with physical, sexual, emotional, and financial aggression.
The research findings will inform a new online group intervention called Healthy Peer Relationships on the Spectrum (HEARTS) that will equip youth with skills for establishing positive peer relationships and enable them to discern quality relationships, trustworthiness, perceived degrees of intimacy, and conflict resolution.
“Autistic adolescents and young adults need and deserve more than just social skills classes-meaning, more than lessons about how to have conversations or make eye contact with neurotypical people,” says Rothman. “This project aims to address something equally important about how all people navigate our social worlds-which is whether the relationships that we do get into are healthy, supportive, mutual, and respectful.”
She also notes that these lessons are vital for all people. “It is really important to our team that autistic research participants understand that we do not consider them less-than just because they might benefit from relationship coaching,” says Rothman. “Relationships can be hard for everyone.”
As a leading researcher in intimate partner violence who has sought to reduce health disparities in substance abuse, youth dating, and sexual violence, Rothman says she is turning her focus to support the autistic community by establishing new standards of care for valuing, accommodating, and elevating individuals who are autistic or neurodiverse.
“Autistic people aren’t only patients and research participants-they are also our students, faculty, staff, and members of the surrounding community,” says Rothman.