Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Feb 15;28(2):303-310.
doi: 10.1093/jamia/ocaa169.

Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design

Kristine D Cantin-Garside  1 , Maury A Nussbaum  1 , Susan W White  2 , Sunwook Kim  1 , Chung Do Kim  3 , Diogo M G Fortes  3 , Rupa S Valdez  3
Affiliations

Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design

Kristine D Cantin-Garside et al. J Am Med Inform Assoc. .

Abstract

Objective: Monitoring technology may assist in managing self-injurious behavior (SIB), a pervasive concern in autism spectrum disorder (ASD). Affiliated stakeholder perspectives should be considered to design effective and accepted SIB monitoring methods. We examined caregiver experiences to generate design guidance for SIB monitoring technology.

Materials and methods: Twenty-three educators and 16 parents of individuals with ASD and SIB completed interviews or focus groups to discuss needs related to monitoring SIB and associated technology use.

Results: Qualitative content analysis of participant responses revealed 7 main themes associated with SIB and technology: triggers, emotional responses, SIB characteristics, management approaches, caregiver impact, child/student impact, and sensory/technology preferences.

Discussion: The derived themes indicated areas of emphasis for design at the intersection of monitoring and SIB. Systems design at this intersection should consider the range of manifestations of and management approaches for SIB. It should also attend to interactions among children with SIB, their caregivers, and the technology. Design should prioritize the transferability of physical technology and behavioral data as well as the safety, durability, and sensory implications of technology.

Conclusions: The collected stakeholder perspectives provide preliminary groundwork for an SIB monitoring system responsive to needs as articulated by caregivers. Technology design based on this groundwork should follow an iterative process that meaningfully engages caregivers and individuals with SIB in naturalistic settings.

Keywords: autism spectrum disorders; behavioral monitoring; caregivers; consumer health informatics; nonsuicidal self-injury; qualitative analyses.

PubMed Disclaimer

References

    1. Baio J, Wiggins L, Christensen DL, et al.Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ 2018; 67 (6): 1–12. - PMC - PubMed
    1. Kanne SM, Mazurek MO.. Aggression in children and adolescents with ASD: Prevalence and risk factors. J Autism Dev Disord 2011; 41 (7): 926–37. - PubMed
    1. McCracken JT, McGough J, Shah B, et al.Risperidone in children with autism and serious behavioral problems. N Engl J Med 2002; 347 (5): 314–21. - PubMed
    1. Mahatmya D, Zobel A, Valdovinos MG.. Treatment approaches for self-injurious behavior in individuals with autism: behavioral and pharmacological methods. J Early Intens Behav Interven 2008; 5 (1): 106–18.
    1. Minshawi NF, Hurwitz S, Fodstad JC, et al.The association between self-injurious behaviors and autism spectrum disorders. Psychol Res Behav Manag 2014; 7: 125–36. - PMC - PubMed

Publication types