Co-Designed Framework Aims to Improve Autism Assessment for People With Moderate or Severe Intellectual Disabilities

Researchers in the Netherlands have developed a framework intended to make autism assessment more accurate and more useful for people with moderate to severe intellectual disabilities.

The team set out to improve what they call descriptive autism assessment for this population. The goal was to co-design a framework that would include an overview of suitable assessment instruments, recommendations for evaluating broader functioning, guidance for translating findings into daily care, and instructions for involving representatives and staff in the process.

The study used a participatory design involving parents/representatives, clinicians, care staff, and management from ID and mental health services. The process included a literature study of autism-related instruments, a Delphi study to reach consensus on suitable instruments, and four focus group discussions. This review identified 20 relevant instruments. The Delphi panel consisted of 37 participants and took three rounds to converge. Of the 20 instruments identified, 13 were selected as suitable for autism assessment in people with moderate to severe intellectual disabilities.

The selection criteria the panel applied are telling. Low burden for the individual being assessed was a priority, reflecting the reality that lengthy or demanding assessments can be especially difficult for people with intellectual disabilities. Interestingly, while quick assessments were preferred, panel members raised concerns that speed could lead to oversimplifying the autism assessment, a tension the researchers noted explicitly.

The four focus group discussions explored stakeholder involvement and the role of assessment instruments in the diagnostic process. The focus group discussions had 5 to 12 participants each. These discussions generated eight themes concerning stakeholder involvement, centered on questions of timing, roles, and goals. When should parents and caregivers be brought in, what role should each participant play, and what should the involvement aim to achieve? The focus groups also revealed that no consensus emerged on an optimal combination of assessment tools, but participants agreed that clarity about an instrument’s purpose and its implications was important.

The final focus group discussion identified five potentially overlapping phases in the diagnostic process, suggesting that assessment for this population is better understood as a sequence of connected stages rather than a single event. The study’s conclusion emphasizes that the co-designed framework provides an overview of instruments for autism assessment and stresses early and continuous involvement of parents and caregivers. Their participation, the researchers argue, is essential for defining concerns, guiding assessment goals, sharing information, and applying diagnostic outcomes to improve daily care and support.

The participatory design involved parents/representatives, clinicians, care staff, and management from ID and mental health services.

The researchers acknowledge that the framework does not prescribe a single best combination of tools, reflecting the genuine uncertainty that remains in this field. What it does provide is a structured, evidence-informed starting point: a vetted list of 13 instruments, a set of criteria for choosing among them, and a phased view of the diagnostic process with stakeholder involvement built in from the start.

Subject of Research: Co-design of a descriptive autism assessment framework for people with moderate or severe intellectual disabilities in the Netherlands

Article Title: Improving Descriptive Diagnostics of Autism in People With Moderate or Severe Intellectual Disabilities: A Qualitative Participatory Study

Article References: de Bildt, A., Jonker, J., Damen, N., & Alma, M. A. (2026). Improving Descriptive Diagnostics of Autism in People With Moderate or Severe Intellectual Disabilities: A Qualitative Participatory Study. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-026-07583-y

Image Credits: AI Generated

DOI: 10.1007/s10803-026-07583-y

Keywords: autism, intellectual disability, diagnostic assessment, Delphi study, participatory research, focus groups, psychometrics, Netherlands, caregiver involvement, descriptive diagnostics, Improving, Descriptive