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Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders

DOI:10.1007/s10803-018-3642-6
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Thomas W. Frazier
Thomas W. Frazier
Thomas W. Frazier
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Geraldine Dawson
Geraldine Dawson
Geraldine Dawson
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Donna S Murray at Autism Speaks
Donna S Murray
  • Autism Speaks
Andy Shih at Autism Speaks
Andy Shih
  • Autism Speaks
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Abstract and Figures

Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30–59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities.
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Vol.:(0123456789)
1 3
Journal of Autism and Developmental Disorders (2018) 48:3965–3971
https://doi.org/10.1007/s10803-018-3642-6
BRIEF REPORT
Brief Report: ASurvey ofAutism Research Priorities Across aDiverse
Community ofStakeholders
ThomasW.Frazier1· GeraldineDawson2· DonnaMurray1· AndyShih3· JessicaSnyderSachs4· AngelaGeiger4
Published online: 15 June 2018
© Springer Science+Business Media, LLC, part of Springer Nature 2018
Abstract
Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve com-
munity engagement in research. We describe the results of an online survey that gathered input from community stakeholders
regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages
30–59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though
both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on
co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making
by public and private funders when developing science funding priorities and engaging in science dissemination activities.
Keywords Autism· Research priorities· Caregivers· Funding· Stakeholders· Adult transition
Introduction
Over the last two decades, research has identified and
begun to explain the etiologic and phenotypic heteroge-
neity of autism (de la Torre-Ubieta etal. 2016; Georgia-
des etal. 2014). Increases in public and private/non-profit
research funding have been an important part of promot-
ing autism research advances. From 2008 to 2015, autism
research funding in the US (public and private) expanded
from $222million to $343million, with projected increases
to $496million by 2020 (source: NIH Reporter) (National
Institutes of Health 2017). Expanded funding has paralleled
increases in the number of autism publications, from < 500
in 2000 to > 3500 in 2015 (source: US National Library of
Medicine PubMed database search) (Ncbi Resource Coor-
dinators 2017). Similarly, the number of patent applications
relevant to autism increased from 4 in 2001 to almost 60
in 2014 (source: US Patent and Trademark Office AppFT)
(US Patent and Trademark Office 2017). While not every
research area has received strong funding, investigations
have proceeded on a wide front, with topics ranging from
genetics and basic neuroscience to cognition and behavior
to clinical trials and quality of life. As the cohorts of young
children diagnosed during the expansion of autism aware-
ness have progressed to adolescence and early adulthood,
research into understudied topics such as adult transition has
also increased. However, absolute funding levels for services
and lifespan research—areas important to the quality of life
of many individuals and families—lag behind (Interagency
Autism Coordinating Committee (IACC) October 2017).
Understanding the wide range of needs and desires of
people that are directly affected by autism, including per-
sons on the spectrum and families, as well as providers
(clinicians and educators) and researchers, is important in
setting priorities regarding autism research funding. (Pel-
licano etal. 2014a, b). Including viewpoints of those with
autism and their families as well as those who work directly
with persons on the spectrum, such as therapists and teach-
ers, in decision-making can increase the benefits that future
research delivers to individuals and families, iteratively
Electronic supplementary material The online version of this
article (https ://doi.org/10.1007/s1080 3-018-3642-6) contains
supplementary material, which is available to authorized users.
* Thomas W. Frazier
thomas.frazier@autismspeaks.org
1 Science Department, Autism Speaks, 1 East 33rd Street 4th
Floor, NewYork, NY10016, USA
2 Department ofPsychiatry andBehavioral Sciences, Duke
University, Durham, NC, USA
3 Global Autism Public Health, Autism Speaks, NewYork,
USA
4 Autism Speaks, NewYork, USA
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... 6,16,17 In contrast, many do not endorse efforts to find causes of autism. 15,[18][19][20][21][22] In a recent survey (n=6,004) with autistic (8.1%) and non-autistic respondents, studies on genetic markers and prenatal screening arose as an area to avoid. 18 Standing in contrast to traditional positions of non-autistic-led charities, the Autistic Self Advocacy Network has issued a position statement: "As genetic research continues to develop, autistic people must have our say in how it should be used, and not used." ...
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