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Special Population Consideration in ASD Identification and Treatment

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Trauma, Autism, and Neurodevelopmental Disorders

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Abstract

This chapter discusses perspectives on ASD among females and racial and ethnic minority people: two populations where there continue to be troubling disparities in the diagnosis of ASD. The first portion of the chapter examines prevalence differences between males and females with ASD, and explores the biological and sociological reasons for these differences. The second part of the chapter more specifically examines racial and ethnic differences in ASD prevalence and hypothesized family, community, provider and system-level reasons for these disparities. The final section of this chapter discusses implications for practice and policy concerning autism care, advocacy, future research, and ethical issues. We conclude the chapter with a note from the editors that further illuminates why issues related to females and racial and ethnic minorities are important to include in the conversation on ASD and TSRD.

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Notes

  1. 1.

    Prior to the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, autism spectrum disorders included autistic disorder, PDD-NOS, Asperger’s disorder, Rett disorder, and childhood disintegrative disorder. The general label “autism spectrum disorder” in the DSM-5 supplanted these labels, and they are no longer current. We will use these labels when referring to studies published before 2013 that differentiated these diagnoses.

  2. 2.

    There are many helpful frameworks, such as the Help-Seeking Behavior Model [171], that can be applied to understanding how the interaction between cultural factors and the healthcare system could have led to delays in Maria’s being correctly diagnosed and receiving appropriate care. A comprehensive discussion and comparison of these theoretical models is beyond the scope of this chapter, but suffice it to say, there has been a long-standing interest among our colleagues in the research community about the reason(s) for observed disparities among different cultural groups seeking care for conditions like autism.

  3. 3.

    New policies can also shift the way basic research is conducted to improve scientific understanding of ASD and support more equitable access to diagnosis and treatment. For example, as in most other biomedical fields, male animal models dominate research in ASD and related disorders like Rett syndrome. Researchers have historically avoided using female animals based on the assumption that hormonal fluctuations in females may alter results (which is precisely why female inclusion is important). Excluding females from study design to simplify experiments, decrease costs, or increase power means researchers have been missing valuable data.

    In 1993, the National Institutes of Health (NIH) passed the Revitalization Act, which mandated that all of its funded research include girls and women. As a result, over half of participants in NIH-funded clinical research are now women. Similarly, recent NIH policy aims to eliminate sex and gender bias in animal and cell-based biomedical studies. Specifically, funding is reserved for experiments that equally balance male and female cells or animals unless explicitly and justifiably aiming to investigate sex-specific questions. These types of policy reforms can have potentially very powerful implications for ASD research without being financially costly. However, efforts to address the issue of sex and race inclusion across biomedical research must be multidimensional—for example, incorporating program oversight, review and policy, and educational outreach and training [172].

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Authors and Affiliations

  1. Department of Psychology, University of Massachusetts Boston, Boston, MA, USA

    Alison Chavez

  2. Department of Pediatrics, Oregon Health and Science University, Portland, OR, USA

    Lark Huang-Storms

  3. Division of General Pediatrics, Oregon Health and Science University, Portland, OR, USA

    Katharine Zuckerman

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  1. Alison Chavez
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Correspondence to Alison Chavez .

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  1. Developmental Medical Center, Boston Children’s Hospital, Boston, MA, USA

    Jason M. Fogler

  2. Oregon Health & Science University, Eugene, OR, USA

    Randall A. Phelps

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Chavez, A., Huang-Storms, L., Zuckerman, K. (2018). Special Population Consideration in ASD Identification and Treatment. In: Fogler, J., Phelps, R. (eds) Trauma, Autism, and Neurodevelopmental Disorders. Springer, Cham. https://doi.org/10.1007/978-3-030-00503-0_9

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