Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood

TY - JOUR

T1 - Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood

AU - Bal, Vanessa H.

AU - Hendren, Robert L.

AU - Charman, Tony

AU - Abbeduto, Leonard

AU - Kasari, Connie

AU - Klinger, Laura Grofer

AU - Ence, Whitney

AU - Glavin, Tara

AU - Lyons, Gregory

AU - Rosenberg, Erin

PY - 2018/11/1

Y1 - 2018/11/1

N2 - The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure “meaningful outcomes” from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of “outcome” varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446–1454.

AB - The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure “meaningful outcomes” from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of “outcome” varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446–1454.

KW - lifespan

KW - outcome

KW - stakeholders

KW - strengths

UR - http://www.scopus.com/inward/record.url?scp=85055708729&partnerID=8YFLogxK

U2 - 10.1002/aur.2034

DO - 10.1002/aur.2034

M3 - Comment/debate

C2 - 30375190

AN - SCOPUS:85055708729

SN - 1939-3792

VL - 11

SP - 1446

EP - 1454

JO - Autism research

JF - Autism research

IS - 11

ER -