In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.

While there is emerging evidence on the prevalence of physical and mental health conditions among autistic adults, less is known about this population’s needs during older adulthood (aged 65+). We conducted a cross-sectional retrospective cohort study of 2016–2017 Medicare data to compare the prevalence of physical and mental health conditions in a national sample of autistic older adults (N = 4685) to a matched population comparison (N = 46,850) cohort. Autistic older adults had significantly greater odds of nearly all physical health conditions including epilepsy (odds ratio = 18.9; 95% confidence interval = 17.2–20.7), Parkinson’s disease (odds ratio = 6.1; 95% confidence interval = 5.3–7.0), and gastrointestinal conditions (odds ratio = 5.2; 95% confidence interval = 4.9–5.5). Most mental health conditions were more common among autistic older adults, including schizophrenia and psychotic disorders (odds ratio = 25.3; 95% confidence interval = 22.4–28.7), attention deficit disorders (odds ratio = 24.4; 95% confidence interval = 16.2–31.0), personality disorders (odds ratio = 24.1; 95% confidence interval = 17.8–32.5), and suicidality or self-inflicted injury (odds ratio = 11.1; 95% confidence interval = 8.9–13.8). Health conditions commonly associated with advanced age in the general population (e.g. osteoporosis, cognitive disorders, heart disease, cancer, cerebrovascular disease, osteoarthritis) were also significantly more common among autistic older adults. By highlighting the significant physical and mental health needs for which autistic older adults require care, our findings can inform healthcare systems, healthcare providers, and public health initiatives seeking to promote well-being in this growing population.

Purpose: Valid, reliable, and efficient patient-reported outcome measures are needed to quantify quality of life (QOL) outcomes after cochlear implantation to supplement information obtained from performance-based outcomes. We previously developed the Cochlear Implant Quality of Life (CIQOL) item bank to serve as the source of items for subsequent instruments. This study reports the development and psychometric properties for 2 of these new instruments, the CIQOL-35 Profile and the CIQOL-10 Global. Method: Cochlear implant (CI) users referred from the CIQOL Development Consortium (n = 371), consisting of 20 CI centers across the United States, provided responses to the 81-item CIQOL item bank, which are grouped into 6 QOL domains (communication, emotional, entertainment, environment, listening effort, and social). Responses to the 81 CIQOL items were analyzed using item response theory to determine individual item difficulty, discrimination, and model fit to select the set of items for the profile instrument and global measure that would optimize their measurement characteristics. Results: The 35-item CIQOL-35 Profile instrument assesses outcomes represented in the 6 domains of the CIQOL final item pool. The 10-item CIQOL-10 Global measure produces a single, overall QOL score. After ensuring the upper and lower ends of the item difficulty continuum were represented (item difficulty range: −2.48 to 2.47), the items with the highest discrimination ability for each domain were selected for the CIQOL-35 Profile instrument (discrimination range: 0.67-1.37). Items were selected for the CIQOL-10 Global measure in a similar manner. Conclusion: The CIQOL-35 Profile and CIQOL-10 Global instruments provide psychometrically sound and efficient measures that can be used to assess QOL in adult CI users in both clinical and research settings.

IMPORTANCE Only limited evidence is available describing the contribution of patient-related factors to quality of life in adults with cochlear implants.OBJECTIVE Assess the association between demographic, hearing-related, and cochlear implant-related factors and quality of life by using a new Cochlear Implant Quality of Life (CIQOL) item bank, which was developed to meet rigorous psychometric standards. DESIGN, SETTING, AND PARTICIPANTSMulticenter cross-sectional study of adults 18 to 89 years of age who had at least 1 year of cochlear implant use and who were recruited through a consortium of 20 cochlear implant centers in the United States. Using an online format, questionnaires were sent to the first 500 participants who contacted the research team. Of these participants, 371 (74.2%) completed the questionnaire. Demographic, hearing-related, and cochlear implant-related data were obtained along with responses to each of the 81 items in the CIQOL item bank. Multivariable linear regression was used to examine demographic, hearing-related, and cochlear implant-related factors associated with scores in each of the 6 CIQOL domains (communication, emotional, entertainment, environment, listening effort, and social).MAIN OUTCOMES AND MEASURES Association among demographic, hearing-related, and cochlear implant-related factors and CIQOL scores for each of 6 domains. RESULTSOf the 371 participants who completed the questionnaire, 222 (59.8%) were women, and the mean (SD) age was 59.5 (14.9) years. The CIQOL scores were normally distributed across the 6 domains. Being employed, having higher household income, longer duration of hearing loss prior to cochlear implantation, and having bilateral rather than unilateral cochlear implantation were associated with higher CIQOL scores in 1 or more domains, but the effect size varied widely (β, 0.1-6.9). Better sentence recognition ability (using AzBio to measure speech recognition) was associated with only a small positive effect size for the communication (β, 0.0 [95% CI, 0.0-0.1]), entertainment (β, 0.0 [95% CI, 0.0-0.1]), and environmental (β, 0.0 [95% CI, 0.0-0.0]) domains. Increased age was associated with lower CIQOL in the entertainment domain (β, −0.3 [95% CI, −1.5 to −0.4]). The demographic, hearing-related, and cochlear implant-related factors included in the multivariable regression models accounted for only a small percentage of the variance in CIQOL domain scores (R 2 , 0.08-0.17).CONCLUSIONS AND RELEVANCE Several factors were found to predict higher or lower CIQOL scores in specific domains, with speech-recognition ability having only a minimal association. Despite evaluating a large number of demographic, hearing-related, and cochlear implant-related factors, the multivariable models accounted for only a small amount of CIQOL variance. This suggests that patient or other characteristics that contribute to cochlear implant-related quality of life remain largely unknown.

Objective: Validated and reliable patient-reported outcome measures (PROMs) may provide a comprehensive and accurate assessment of the real-world experiences of cochlear implant (CI) users and complement information obtained from speech recognition outcomes. To address this unmet clinical need, the Cochlear Implant Quality of Life (CIQOL)-35 Profile instrument and CIQOL-10 Global measure were developed according to the Patient-Reported Outcomes Information System (PROMIS) and COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) guidelines. The CIQOL-35 Profile consists of 35 items in six domain constructs (communication, emotional, entertainment, environment, listening effort, and social) and the CIQOL-10 Global contains 10 items that provide an overall CIQOL score. The present study compares psychometric properties of the newly developed CIQOL instruments to two legacy PROMs commonly used in adult CI users. Design: Using a prospective cohort design, a sample of 334 adult CI users recruited from across the United States provided responses to (1) the CIQOL instruments;(2) a CI-specific PROM (Nijmegen Cochlear Implant Questionnaire, NCIQ); and (3) a general-health PROM (Health Utilities Index 3 [HUI-3]). Responses were obtained again after 1 mo. The reliability and validity of the CIQOL-35 Profile and CIQOL-10 Global instruments were compared with the legacy PROMs (NCIQ and HUI-3). Psychometric properties and construct validity of each instrument were analyzed using confirmatory factor analysis, item response theory (IRT), and test-retest reliability (using Pearson's correlations), where appropriate.Results: All six CIQOL-35 Profile domains and the CIQOL-10 Global instrument demonstrated adequate to strong construct validity. The majority of the NCIQ subdomains and NCIQ total score had substantial confirmatory factor analysis model misfit, representing poor construct validity. Therefore, IRT analysis could only be applied to the basic sound performance and activity limitation subdomains of the NCIQ. IRT results showed strong psychometric properties for all CIQOL-35 Profile domains, the CIQOL-10 Global instrument, and the basic sound performance and activity limitation subdomains of the NCIQ. Test-retest reliability was strong for the CIQOL-35 Profile, CIQOL-10 Global, and NCIQ, but moderate to weak for the HUI-3; the hearing score of the HUI-3 demonstrated the weakest reliability. Conclusion:The CIQOL-35 Profile and CIQOL-10 Global are more psychometrically sound and comprehensive than the NCIQ and the HUI-3 for assessing QOL in adult CI users. Due to poor reliability, we do not recommend using the HUI-3 to measure QOL in this population. With validation and psychometric analyses complete, the CIQOL-35 Profile measure and CIQOL-10 Global instrument are now ready for use in clinical and research settings to measure QOL and real-world functional abilities of adult CI users.