# Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum

> **NIH NIH R01** · PORTLAND STATE UNIVERSITY · 2022 · $619,580

## Abstract

Abstract
Individuals on the autism spectrum experience a “services cliff” when they transition to adulthood, and have
poor health and social outcomes over the life course. In response, the National Institute of Mental Health has
highly prioritized services research to improve life outcomes for autistic adults. The lack of validated patient-
reported outcome measures (PROMs) for use with autistic adults is a significant barrier to conducting high-
quality services research with this population. The Academic Autism Spectrum Partnership in Research and
Education (AASPIRE) has been conducting community based participatory research (CBPR) in partnership
with autistic adults, family members, and services professionals for over twelve years. We have used a
collaborative process to adapt survey instruments to be accessible to autistic adults with diverse
characteristics. More work is needed to create a full package of high-priority PROMs and to rigorously assess
their psychometric properties. Our long-term goal is to improve life outcomes for autistic adults. The objective
of this proposal is to use a CBPR approach to create and test a package of PROMs for evaluating the
effectiveness of services interventions for autistic adults across multiple real-world settings. We will achieve
our objective by meeting the following specific aims: 1) to collaboratively create the Autism Patient Reported
Outcomes Measures (AutPROM) Toolbox; 2) to psychometrically test the AutPROM Toolbox measures at
baseline and assess expected distributions; and 3) to assess the instruments’ sensitivity in detecting change
and explore factors that may be associated with change in outcomes over time. We will use a modified Delphi
process to identify constructs and measures to include in the AutPROM Toolbox. We will then work with our
diverse Community Council to collaboratively adapt instruments, as needed. Where appropriate, we will create
two versions of each measure – one for use by autistic adults and one for use by proxies. We will conduct
cognitive interviews to establish content validity and comprehensibility of the adapted instruments. We will then
test the full AutPROM Toolbox in a real-world cohort of 750 autistic adults, with sub-cohorts recruited from 1)
healthcare systems; 2) disability services systems; and 3) community organizations. We will conduct surveys
with participants at baseline and 6 and 12 months, and will use longitudinal growth curve modeling to test
change over time and identify participant characteristics that are associated with changes in outcomes. We will
use qualitative methods to understand how changes in scores on AutPROM Toolbox instruments correspond
to participants’ narratives of how their life may have changed during the study period. The proposed project will
create a critically-needed set of PROMs that can be used to evaluate services interventions for autistic adults
across multiple real-world settings. The project will also identify factors t...

## Key facts

- **NIH application ID:** 10304167
- **Project number:** 5R01MH121407-03
- **Recipient organization:** PORTLAND STATE UNIVERSITY
- **Principal Investigator:** Christina M Nicolaidis
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $619,580
- **Award type:** 5
- **Project period:** 2020-02-07 → 2024-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10304167

## Citation

> US National Institutes of Health, RePORTER application 10304167, Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum (5R01MH121407-03). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10304167. Licensed CC0.

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