Unheard Voices: A Systematic Literature Review of Studies Using Self-Report Methods to Gather the Perspectives of Autistic Adults with Intellectual Disability

Abstract

Background:

Autistic individuals with intellectual disability remain significantly underrepresented in research, particularly in studies that capture their lived experiences through self-report methods. This systematic review critically examines existing research employing self-report methods in studies where the focus is on autistic adults who have intellectual disability, evaluating the scope of this research, the self-report measures used, and the extent of community involvement.

Methods:

We conducted a systematic literature review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched PsycINFO, Scopus, MEDLINE, ERIC, CINAHL, and Web of Science for studies published between January 2013 and July 2023. We conducted a narrative synthesis to evaluate study characteristics, the use of self-report measures, and the involvement of autistic individuals and their communities in the research process.

Results:

Only 14 studies met the inclusion criteria. The majority focused narrowly on evaluating interventions, with little attention paid to exploring the broader lived experiences of autistic adults with intellectual disability. We identified 24 self-report measures, yet only two had been validated specifically for individuals with intellectual disability. Furthermore, less than half of the remaining measures reported the use of any adaptations or accommodations such as visual aids or simplified language. Alarmingly, community involvement was almost entirely absent, with no studies incorporating co-production with autistic individuals.

Conclusions:

This review reveals a critical and urgent need for autism research that genuinely includes and represents autistic adults with intellectual disability. It is imperative that future research prioritizes the development and rigorous validation of accessible self-report tools, expands its focus beyond intervention outcomes, and commits to the meaningful involvement of autistic individuals throughout the research process. Addressing these profound gaps is essential for building an equitable and inclusive body of knowledge that fully recognizes and responds to the diverse experiences within the autistic community.

Community Brief

Why is this an important issue?

Autistic people with intellectual disabilities are often left out of research that tries to understand the experiences of autistic individuals. Because of this, their unique needs and challenges might not be fully understood or considered when creating support services. Most research relies on the opinions of parents, teachers, and clinicians instead of hearing directly from autistic people, especially those with intellectual disabilities.

What is the purpose of the review?

This study aimed to look at research that directly asks autistic adults with intellectual disabilities about their own experiences. The researchers wanted to see how much research exists, what tools have been used to collect views, and whether autistic individuals and their communities are involved in the research process.

What did the researchers do to review the literature?

The researchers reviewed studies from 2013 to 2023 that focused on autistic adults with intellectual disabilities. They looked at how the studies were done, the tools used to gather information, and how much autistic individuals were involved in the research.

What studies did the authors find?

The review found 14 studies that met the criteria. Most of these studies were aimed at evaluating specific programs or treatments rather than exploring broader life experiences. Out of 24 tools used, only 2 were specifically designed for people with intellectual disabilities. There was very little involvement of autistic individuals in shaping the research. Many studies did not explain how they made the tools easy to use for people with intellectual disabilities.

In summary, what did those studies show?

This study shows that there is still a big gap in research that includes autistic adults with intellectual disabilities. More work is needed to create better tools for gathering their views, and they should be more involved in the research process to make sure their voices are heard.

What are the remaining gaps in the literature?

With just 14 studies identified that used self-report measures with autistic adults, it is clear that we need to know more about their views on a range of areas especially their support needs and priorities, and how to improve their quality of life, from their perspective.

Based on this review, what do the authors recommend?

Future research should include these adults’ own perspectives to understand their needs and priorities better. This means using methods that allow them to share their experiences directly instead of relying mainly on caregivers or others to speak on their behalf. Researchers also need to use self-report measures more often, especially for topics such as quality of life and well-being, where it’s essential to capture the person’s own viewpoint.