Pubmed du 07/12/25
1. Kaplan-Kahn EA, Benecke RM, Graham Holmes L, Miller JS. Understanding and measuring caregiver-reported quality of life among minimally verbal autistic children with intellectual disability. Autism. 2025: 13623613251394995.
To address the dearth of literature on outcomes for autistic individuals with significant intellectual disability, researchers require validated measures to use in research. This study examined the psychometric properties of PROMIS quality-of-life caregiver-proxy scales included in the PROMIS Autism Battery-Lifespan among autistic children who are minimally verbal and with intellectual disability (MVID). We examined basic psychometric properties of the PROMIS caregiver-proxy scales and tested the scales for measurement invariance between groups of autistic children who are minimally verbal with intellectual disability and those without signficant intellectuatl disability (N = 448). We also descriptively examined feedback from caregivers regarding the appropriateness of the questions to capture meaningful outcomes for their autistic children who are minimally verbal with intellectual disability. Results indicated that some PROMIS caregiver-proxy scales (Anger, Positive Affect, and Life Satisfaction) exhibited strong psychometric evidence and content validity, but many other scales either did not demonstrate measurement invariance between groups or included a high proportion of items endorsed by caregivers as not applicable for their minimally verbal autistic child. Our findings emphasize the need for continued work developing appropriate measures for capturing meaningful outcomes among minimally verbal autistic people with significant intellectual disability. Researchers need reliable tools to study outcomes for autistic individuals with significant intellectual disability. This study looked at the PROMIS caregiver-proxy scales from the PROMIS Autism Battery–Lifespan for minimally verbal autistic children with intellectual disability. These scales were made to capture aspects of quality of life important for people on the autism spectrum. We compared responses from parents of autistic children with and without significant cognitive and language issues and checked if the questions were suitable for children with high support needs. Results showed that some scales (Anger, Positive Affect, and Life Satisfaction) worked well, but others did not work as well for this group. Our study highlights the need to develop better tools to measure meaningful outcomes for autistic people with the highest support needs. eng.
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2. Life BE, Thomas TR, Asher R, Bruwer Z, Buckle KL, Chepkirui D, Donald KA, Dwyer P, Halladay A, Harker S, Ivankovic F, Kamuya DM, Kuo S, Natri H, Phan JM, Robinson E, van der Merwe C. Autism genetics: perspectives, discourse, and community engagement. Trends Genet. 2025.
Autism genetics research has the capacity to improve the quality of life of autistic community members, but research priorities vary widely across stakeholders. We summarize key points from our discussion series on autism genetics, highlighting diverse perspectives. Working together, we aim to encourage healthy engagement in autism genetics research.
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3. van Asselt A, Roke Y. Co-creating the Stress Autism Mate (SAM): development of an mHealth application for autistic adults using a design thinking approach. Health Psychol Behav Med. 2025; 13(1): 2597607.
BACKGROUND: Mobile health (mHealth) applications are becoming increasingly popular for delivering mental health support, yet insights on how to tailor them effectively for autistic individuals remain limited. METHODS: This paper describes the co-creation process of the Stress Autism Mate (SAM), a free, evidence-based stress management application for autistic adults. RESULTS: Development was guided by the five stages of the Design Thinking framework: Empathise, Define, Ideate, Prototype, and Test. Various challenges encountered over seven years of development are outlined, along with the iterative refinements made to address them. Based on continuous feedback from autistic adults, development emphasised a minimalist, predictable interface, essential personalisation options, and stress-related insights readily applicable to daily life. DISCUSSION: The lessons learned may offer practical guidance for designing tailored mHealth applications for autistic adults and other populations with specific needs or preferences.
