Alcohol is the most commonly used substance among adolescents, and marijuana is the most commonly used illicit drug. Emerging evidence suggests that at least some autistic individuals may be at increased risk of substance use disorder compared with allistic counterparts, potentially to control social anxiety or facilitate social interaction. However, to the best of our knowledge, U.S. population-based estimates of substance use by autistic youth are limited. The aim of this perspective article was to highlight the lack of data sets that collect information about alcohol and marijuana use by autistic youth in the United States. We used a four-step investigation to identify potential data sources that could provide an estimate of the prevalence of alcohol and/or marijuana use in autistic youth, without regard to whether those estimates would be robust. We identified a total of 19 potential U.S. data sources. Of these, only one included information about both autism and alcohol and/or marijuana by youth. There is too little research on substance use by autistic adolescents, and rigorously collected data would benefit the field. Our recommendations include increased federal funding for data collection from autistic youth on substance use, additional questions on nationally representative surveys that assess autism status in multiple ways, and the use of robust measures of substance use that allow for characterization of substance use according to multiple dimensions. As the number of autistic youth identified increases and these youth transition into adulthood, better understanding of their substance use patterns is critical for developing health promotion efforts that appropriately and fully serve the needs of autistic youth.
Lay summary: Why is this topic important?: Alcohol is the most commonly used substance among adolescents, and marijuana is the most commonly used illicit drug. Previous studies suggest that at least some autistic individuals may be at increased risk of substance use disorder compared with allistic counterparts, potentially to control social anxiety or facilitate social interaction. However, to the best of our knowledge, estimates of substance use by autistic youth in the United States are limited.What is the purpose of this article?: This study was performed to highlight the lack of data sets that collect information about alcohol and/or marijuana use by autistic youth in the United States. We systematically reviewed U.S. data sources on child and/or adolescent health, disability, and/or substance use to identify sources that could generate estimates of the prevalence of substance use among autistic adolescents in the United States, even if those estimates may not be stable due to small sample sizes or other methodological weaknesses.What is the perspective of the authors?: The authors are a team of allistic researchers. M.B.-M. and S.B.-F. are pediatricians. E.F.R. and A.A. are public health researchers. S.B.-F. has an extensive background in providing clinical health care services to children with autism and is an autism researcher. R.A.N.P. and A.C.S.-R. are master's level public health research assistants. E.F.R., A.A., and M.B.-M. are adolescent health research experts. E.F.R. has an adolescent daughter on the autism spectrum. Our collective positionality is that we identify as people who are not autistic and who select to focus on research that we hope will benefit autistic people and society in general.What did the authors find?: Based on our four-step investigation, we identified 19 U.S. data sources that had the potential to generate estimates of the prevalence of alcohol and/or marijuana use in autistic youth. Only one included information about both autism and substance use.What do the authors recommend?: The National Institutes of Health (NIH), and the National Institute of Alcohol Abuse and Alcoholism (NIAAA) and National Institute of Drug Abuse (NIDA), specifically, should prioritize funding data collection from autistic youth and adults on alcohol and marijuana use, misuse, hazardous use, dependence, and use disorders. In addition, it is critical that nationally representative surveys and data sources include robust questions on autism and substance abuse. This includes assessing autism status in multiple ways (e.g., self-report, diagnosis by a clinician, neuropsychology reports). Substance use questions should include age of first drink or use, frequency of use, quantity of use per day or within a certain number of hours, expectancies, consequences of use, and indicators of alcohol use disorder.How will these recommendations help autistic individuals?: These findings highlight a critical gap in the literature on substance use among autistic youth. Substance use is recognized as a pressing adolescent health problem, and autistic youth deserve evidence-based substance use prevention strategies. Without an estimate of substance use by autistic youth, it is difficult to justify to funding entities the expenditure of resources on the development of evidence-based substance use prevention strategies to benefit them.
Keywords: adolescent; alcohol; marijuana; prevalence; substance use.
Copyright 2020, Mary Ann Liebert, Inc., publishers.