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Effects of Intersectionality Along the Pathway to Diagnosis for Autistic Children With and Without Co-occurring Attention Deficit Hyperactivity Disorder in a Nationally-Representative Sample

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A Correction to this article was published on 19 July 2022

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Abstract

Children with complex behavioral profiles (e.g., ASD + ADHD) may experience delays in obtaining a final diagnosis. Low-resource or underrepresented groups may be at even greater risk for delayed diagnosis. We assessed the effect of sociodemographic factors, symptom complexity and co-occurring conditions, and identifier of first symptoms on diagnostic trajectories among children aged 3–17 years diagnosed with ASD (n = 52) or ASD + ADHD (n = 352) from a nationally-representative sample. Race/ethnicity and gender disparities were evident in both groups. Race, symptom complexity, and co-occuring conditions predicted age of final diagnosis and wait time between first concern and final diagnosis, both of which were staggeringly high. Results suggest a complex influence of sociodemographic factors on the diagnostic pathway, and risk of health disparities as a function of intersectionality.

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Funding

This work was supported in part by the National Institutes of Health, including the National Institute of Mental Health [K01-MH107774] and the National Institute on Minority Health and Health Disparities [U54-MD006882].

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Authors and Affiliations

  1. School of Kinesiology, University of Michigan, 830 N. University Ave., SKB 4120, Ann Arbor, MI, 48109, USA

    Haylie L. Miller

  2. Department of Physical Therapy, University of North Texas Health Science Center, 3500 Camp Bowie Blvd., Fort Worth, TX, 76107, USA

    Haylie L. Miller

  3. Graduate School of Biomedical Sciences, University of North Texas Health Science Center, 3500 Camp Bowie Blvd., Fort Worth, TX, 76107, USA

    Morgan Thomi

  4. Department of Osteopathic Manipulative Medicine/Family Medicine, University of North Texas Health Science Center, 3500 Camp Bowie Blvd., Fort Worth, TX, 76107, USA

    Rita M. Patterson

  5. Department of Biostatistics & Epidemiology, University of North Texas Health Science Center, 3500 Camp Bowie Blvd., Fort Worth, TX, 76107, USA

    Karabi Nandy

  6. Department of Population & Data Sciences, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX, 75390, USA

    Karabi Nandy

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  1. Haylie L. Miller
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Contributions

All authors contributed to the study conception and design. Data collection and analysis were performed by KN, MT, and HLM. The first draft of the manuscript was written by HLM based on a master’s thesis written by MT, and all authors commented on both previous versions of the manuscript. All authors read and approved the final manuscript.

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Correspondence to Haylie L. Miller.

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We acknowledge the preference for identity-first language (i.e., "autistic person") over person-first language (i.e., "person with autism") expressed by many autistic people. We also acknowledge the importance of eliminating ableist and deficit-focused language (e.g., “disorder” instead of “condition”, “symptom” instead of “characteristic”) from the scientific and clinical lexicon. This manuscript is focused on diagnostic practices, and therefore uses some terminology found in the dataset from which the data were derived and in the manuals/codes/descriptions to which we refer when describing the diagnostic process. However, when describing autistic individuals or autistic people’s characteristics in a general sense, we use different language (e.g., “characteristics” instead of “symptoms”) out of respect for the personhood and neurodiversity of the community. Our goal is to highlight barriers to receiving a timely and accurate diagnosis, which can facilitate access to support/accommodation and be affirming to autistic people’s identities.

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Miller, H.L., Thomi, M., Patterson, R.M. et al. Effects of Intersectionality Along the Pathway to Diagnosis for Autistic Children With and Without Co-occurring Attention Deficit Hyperactivity Disorder in a Nationally-Representative Sample. J Autism Dev Disord 53, 3542–3557 (2023). https://doi.org/10.1007/s10803-022-05604-0

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