Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research

Cervantes, Paige E.; Matheis, Maya; Estabillo, Jasper A.; Seag, Dana E M; Nelson, Katherine; Peth-Pierce, Robin; Horwitz, Sarah M.

doi:10.1007/s10803-020-04746-3

Cited by 27 publications

(17 citation statements)

References 22 publications

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“…The International Classification of Functioning, Disability and Health, which is the World Health Organization's framework for measuring health and disability at both individual and population levels, is consistent with this broader perspective (Bölte et al, 2014). Yet, most of the published autism research, and the funding that supports it, remains focused on basic and clinical science (Cervantes et al, 2021; Harris et al, 2021).…”

Section: Figurementioning

confidence: 99%

“…While there have been calls for updated approaches to health and mental health research over the past decade (Glasgow et al, 2012; Insel, 2009; Khoury et al, 2010; Ogilvie et al, 2009) and for updated approaches to autism research (Dingfelder & Mandell, 2011), overall, autism research does not typically feature strong integration across these research stages despite recent growth and expansion of the field. Additionally, autism research continues to lack a focus on translation, dissemination, and implementation of evidence‐based findings; and rarely focuses on implementation of research into policy (Cervantes et al, 2021). A recent call for a strategic approach to bridge public health science and practice proposes a push‐pull‐capacity model that recognizes the need for: prioritization of evidence‐based practices, effective dissemination of interventions, and resources to support capacity‐building, paired with implementation planning for health equity (Brownson, 2021).…”

Section: Figurementioning

confidence: 99%

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Applying a public health approach to autism research: A framework for action

et al. 2022

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Most published autism research, and the funding that supports it, remains focused on basic and clinical science. However, the public health impact of autism drives a compelling argument for utilizing a public health approach to autism research. Fundamental to the public health perspective is a focus on health determinants to improve quality of life and to reduce the potential for adverse outcomes across the general population, including in vulnerable subgroups. While the public health research process can be conceptualized as a linear, 3-stage path consisting of discoverytestingtranslation/dissemination/implementation, in this paper we propose an integrated, cyclical research framework to advance autism public health objectives in a more comprehensive manner. This involves discovery of primary, secondary and tertiary determinants of health in autism; and use of this evidence base to develop and test detection, intervention, and dissemination strategies and the means to implement them in 'real world' settings. The proposed framework serves to facilitate identification of knowledge gaps, translational barriers, and shortfalls in implementation; guides an iterative research cycle; facilitates purposeful integration of stakeholders and interdisciplinary researchers; and may yield more efficient achievement of improved health and well-being among persons on the autism spectrum at the population-level.Lay Summary: Scientists need better ways to identify and address gaps in autism research, conduct research with stakeholders, and use findings to improve the lives of autistic people. We recommend an approach, based in public health science, to guide research in ways that might impact lives more quickly.K E Y W O R D S autism spectrum disorder, communication, knowledge, public health, quality of life When the Children's Health Act of 2000 was signed into law, autism was officially recognized as a national public health priority in the United States. Most recently, it was estimated that 2.27% of the nation's 8-year-old children in 2018 had autism (Maenner et al., 2021), making it more common in childhood than intellectual disability, cerebral palsy, epilepsy, vision impairment or hearing loss, Type 1/Type 2 diabetes or cancer (American Cancer

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Section: Figurementioning

confidence: 99%

Section: Figurementioning

confidence: 99%

Applying a public health approach to autism research: A framework for action

et al. 2022

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“…Even when it is clear that there are different subgroups of people diagnosed with ASD that respond positively, and sometimes spectacularly, to the treatment of CMPD; even when the information about these subgroups are data, not anecdotal; even when the optimal outcome was reported by several groups around the world [70,71]; even when the individual improvements after proper treatments were reported in many properly presented reports [24,39,72]; even when there are several manuscripts that show the importance of the individual response to CMPD [2], the research funding in CMPD has not been enough and in general only 9% was assigned to services research in ASD [73]. The updated information is not reaching the local sources of trusted information for doctors in practice.…”

Section: Why Is the Progress So Slow In Practice When So Much Is Known From Published Research?mentioning

confidence: 99%

Rationale of an Advanced Integrative Approach Applied to Autism Spectrum Disorder: Review, Discussion and Proposal

Ferreira

Loyacono

2021

JPM

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The rationale of an Advanced Integrative Model and an Advanced Integrative Approach is presented. In the context of Allopathic Medicine, this model introduces the evaluation, clinical exploration, diagnosis, and treatment of concomitant medical problems to the diagnosis of Autism Spectrum Disorder. These may be outside or inside the brain. The concepts of static or chronic, dynamic encephalopathy and condition for Autism Spectrum Disorder are defined in this model, which looks at the response to the treatments of concomitant medical problemsto the diagnosis of Autism Spectrum Disorder. (1) Background: Antecedents and rationale of an Advanced Integrative Model and of an Advanced Integrative Approach are presented; (2) Methods: Concomitant medical problems to the diagnosis of Autism Spectrum Disorder and a discussion of the known responses of their treatments are presented; (3) Results: Groups in Autism are defined and explained, related to the responses of the treatments of the concomitant medical problems to ASD and (4) Conclusions: The analysis in the framework of an Advanced Integrative Model of three groups including the concepts of static encephalopathy; chronic, dynamic encephalopathy and condition for Autism Spectrum Disorder explains findings in the field, previously not understood.

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“…The result is a substantial lack of understanding about the opportunities and challenges that autistic adults face in building their futures, achieving their goals and living satisfying and fulfilling lives. These issues clearly matter, however, and in the past decade there has been an increase in publications on autistic adulthood, a new journal specifically dedicated to autism in adulthood, a notable increase in funding dedicated to adult-related issues 6 and numerous policy interventions designed to assist autistic adults to live good lives 7 .…”

Section: Introductionmentioning

confidence: 99%

A capabilities approach to understanding and supporting autistic adulthood

et al. 2022

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There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives.

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Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research

Cited by 27 publications

References 22 publications

Applying a public health approach to autism research: A framework for action

Applying a public health approach to autism research: A framework for action

Rationale of an Advanced Integrative Approach Applied to Autism Spectrum Disorder: Review, Discussion and Proposal

A capabilities approach to understanding and supporting autistic adulthood

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