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. Author manuscript; available in PMC: 2026 Jun 4.
Published in final edited form as: J Autism Dev Disord. 2025 Jun 4;55(9):3410–3415. doi: 10.1007/s10803-025-06905-w

Inclusion of Individuals with Autism and Co-Occurring Intellectual Disability or Language Impairment as Research Participants

Katherine E Reuben a,b,c, Jalayne J Arias a, Shannon Self-Brown a,b,d, Erin Vinoski Thomas a,c,d
PMCID: PMC12354314  NIHMSID: NIHMS2087797  PMID: 40465077

Abstract

Purpose:

Autistic individuals with higher support needs, including those with co-occurring intellectual disability (ID) and language impairment (LI), are underrepresented in research. Researchers who attempt to include this population face unique challenges regarding participant recruitment, informed consent, accurate measurement, and protecting privacy and confidentiality. This leads to gaps in understanding as well as a lack of evidence-based support for clinical and public health practice. Careful consideration is needed to ensure that autism research is appropriately inclusive and does not unduly burden vulnerable populations.

Methods:

This commentary uses the Kass framework as an example scaffold for navigating complex ethical challenges and improving accessibility and fairness in autism research. It reviews existing literature on the topic, and the resulting recommendations are informed by autistic individuals with substantial support needs.

Conclusion:

Increased representation of the full autism spectrum in research is necessary to ensure equitable health outcomes for all autistic individuals. Ethical analysis, guidance from autism research organizations, and recommendations from autistic adults can assist with this process.

Keywords: Autism, intellectual disability, language impairment, inclusive research, ethics

Autism spectrum disorders are neurodevelopmental disabilities characterized by differences and difficulties in two core domains: 1) social communication and 2) restricted and repetitive behaviors. In the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR; American Psychiatric Association [APA], 2022), each domain has three possible levels, which respectively indicate a need for “support” (level 1), “substantial support” (level 2), or “very substantial support” (level 3). Additionally, specifiers indicate if individuals have intellectual disability (ID) or language impairment (LI), two conditions which frequently co-occur with autism. Accordingly, autism has a wide range of presentations. Many autistic individuals excel personally and professionally with relatively little support. Others need frequent or intense support, and a minority of autistic adults require constant supervision and care. Support needs can vary across contexts (APA, 2022), and individuals with high support needs can nonetheless excel in other domains. Likewise, autistic individuals with a range of support needs or ID/LI are capable of participating in research (Nicolaidis et al., 2019).

Despite this, most autism research is not representative of the full autism spectrum or does not report sufficient demographic details to determine its scope of representation. ID was reported for only 6% of research participants in high-impact autism-specific journals in 2016 (Russell et al., 2019), a time at which an estimated 30-50% of those diagnosed with autism had ID, and only an estimated 2% of autism research participants were non- or minimally-verbal (Russell et al., 2019; Stedman et al., 2019). Data from the Centers for Disease Control and Prevention in 2020 (Maenner et al., 2023) found that with an autism prevalence of 2.8% of children, of the 66.7% of autistic children with records on cognitive ability, 37.9% were known to have ID. Rates of ID were even higher among children from minority racial or ethnic backgrounds, especially Black children (50.8%). Thus, under-sampling autistic individuals with ID/LI may also exacerbate under-representation of racial and ethnic minorities. This skewed representation can lead to misleading or counterproductive clinical practice and policy recommendations (Russell et al., 2019; Stedman et al., 2019) as well as leave the voices of the most vulnerable individuals unheard.

Despite the potential benefits of representative enrollment, researchers may perceive many potential barriers, including undue influence and exploitation. However, it is possible to include autistic individuals with ID/LI in research while protecting their rights and autonomy. The same concerns that challenge research participation also impact health, safety, and well-being in unique ways that are not well understood. High-quality and inclusive research is necessary to understand and promote equitable health outcomes (Nicolaidis et al., 2019).

Positionality and Autistic Perspectives

This article was written by experts in research ethics and developmental disability. One of the authors has autism. Additionally, the authors consulted autistic individuals with diverse experiences. This included an individual who is diagnosed with level 2/3 autism and mixed receptive/expressive language impairment; a semi-speaking individual diagnosed with level 2 autism; and an individual who has experienced alienation in research spaces as a dual-role scientist and diagnosed level 2 autistic. These external partners contributed to this article based on experiences with studies that were exclusionary or shaming. In addition to frustration with inaccessible research, partners reported feeling overlooked when autism is framed only as a neutral difference and not a potentially severe disability. This and the comparatively small proportion of higher support needs participants in autism research (see Stedman et al., 2019) contribute to the partners’ feelings of being considered unimportant, unwanted, or something to hide. This lack of representation in research further erases them and serves as a barrier to accessing appropriate support services, mental health treatment, and self-understanding.

Moving Towards Inclusive Research: Applying Formal Ethical Frameworks

Many of the perceived research barriers to inclusion of individuals across the autism spectrum can be overcome through an ethical analysis to support recruitment and enrollment activities. This article demonstrates this analysis using the Kass Framework (Kass, 2001). The six-step framework assesses benefits and burdens to evaluate whether research is ethically justifiable and identify ways to minimize potential harms. Future work may require practical guidance that incorporates new models for inclusion in research.

Establishing Research Goals

A preliminary concern when evaluating a study’s ethics is to determine whether the study will generate results that are accurate, generalizable, and have positive real-world impacts. Each study’s specific goals will vary, and representation of the full spectrum will not be ethically necessary or appropriate in all research. For example, some studies seek to understand how to support autistic adults in independent living while others seek to understand how to ensure that group homes are safe for those who cannot live independently. It is important that the concerns that most often affect autistic individuals with co-occurring ID/LI are not systemically neglected.

Effectiveness

The effectiveness of a given study relies on careful study design and sample selection. Limiting autism research only to autistic individuals who are verbal, of average or high intelligence, and do not require substantial support restricts understanding of key topics. However, recruitment of autistic individuals with ID/LI has declined over time (Stedman et al., 2019). A prominent participatory research group, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), and other clinical and research experts have suggested and successfully implemented approaches to increase inclusivity (Nicolaidis et al., 2019). A combination of approaches is likely to most effectively increase inclusion of autistic individuals with ID/LI and, subsequently, increase contributions to improving life for all autistic individuals.

Barriers

There are genuine barriers to including autistic individuals with ID/LI in research. Some barriers may not be surmountable (e.g., institutional review boards repeatedly blocking inclusive research) (Martino & Schormans, 2018). Nonetheless, for research to generalize across the entire autism spectrum, strategies to mitigate barriers to inclusion should be considered throughout study design and implementation. Barriers which autism researchers might encounter include difficulties recruiting diverse autistic populations; ensuring that participants are capable of giving informed consent; adapting to communication needs, including understanding reliable forms of augmentative and alternative communication (AAC); selecting, adapting, or creating valid tools; responding appropriately to disclosures of harm; and concerns about questioning participants about emotionally intense topics (Hemsley et al., 2019; McDonald et al., 2015; Nicolaidis et al., 2019; Ribenfors & Blood, 2023; Russell et al., 2019; Vinoski Thomas et al., 2021).

Approaches to Reduce Barriers and Support Inclusion

Study recruitment strategies that harness partnerships with service providers or advocacy organizations (e.g., Autistic Self Advocacy Network) can increase recruitment of those with ID/LI (Russell et al., 2019) as well as caregivers and direct support professionals who can connect autistic adults to the research and support their participation. Autistic parents with autistic children are a population with connections and insight that has been under-utilized. Conversely, the demographics of studies that primarily recruit from social media suggest that higher support needs individuals are disproportionately disconnected from online autism communities. This is especially likely for those with ID/LI or severe social difficulties.

Upon enrollment, strategies are needed to reduce unnecessary barriers through the consent process. Accessibility can be increased by using simple language, images or videos, or in-person meetings when feasible (Nicolaidis et al., 2019; Russell et al., 2019). Study-specific comprehension assessments can confirm participants’ understanding or highlight a need for clarification. These same factors can also support participant assent if required (Nicolaidis et al., 2019). Alternatively, supported decision-making, including the use of legally authorized representatives or caregivers, can facilitate ethical consent for individuals who lack capacity.

During the data collection phase, the research team should use tools developed or adapted for diverse autistic individuals when possible. Tools created for and normed on the general population may not accurately measure constructs in autistic individuals, particularly those with ID/LI. Tools intended for individuals with ID or autistic children with LI may be adapted for use with autistic adults with ID/LI. Furthermore, tools can be adapted across contexts, such as adapting measures of “challenging” behavior to capture behavioral manifestations of posttraumatic distress (Kildahl & Helverschou, 2024). Finally, tools can be adapted to use simplified language or images. Participatory research processes can help to check the accessibility of new or adapted tools (Nicolaidis et al., 2019; Vinoski Thomas et al., 2021).

If specific communication modalities are challenging, tools can be read aloud or accompanied by visual aids, including through audio computer-assisted self-interviews. Interviews can be modified to allow responses through text or AAC devices (Nicolaidis et al., 2019). Importantly, researchers must be familiar with reliable forms of AAC: those which can be used independently or aided by low-tech or high-tech devices (e.g., picture exchange, communication boards, or phone apps) (American Speech-Language-Hearing Association, n.d.). In efforts to be inclusive, some research teams allow their research to be influenced by messages created through facilitated communication or similar methods, such as rapid prompting or “Spelling to Communicate”. These approaches involve a facilitator or “communication partner” physically supporting the hand, arm, or shoulder of the nonverbal individual or holding (and potentially moving) the letterboard or device that the nonverbal individual points at to communicate. These approaches are also characterized by a high degree of cueing to prompt responses. Experimental research, such as double-blind authorship tests, have consistently shown that facilitated communication conveys only the thoughts of the facilitator, not the autistic individual (Hemsley et al., 2019; Schlosser et al., 2014; Tostanoski et al., 2013).

Given the potential for facilitator influence on or creation of responses, facilitated communication and related approaches have been denounced by leading organizations, including the American Association on Intellectual and Developmental Disabilities (2019), American Speech-Language-Hearing Association (2018a, 2018b), and International Society for Augmentative and Alternative Communication (2014). High profile cases (e.g., Anna Stubblefield) have demonstrated how facilitated communication can facilitate false consent for abuse, false accusations of abuse, and financial exploitation (Chan & Nankervis, 2014; Sherry, 2016). Uncritically including facilitated responses in research both threatens research validity and further marginalizes nonverbal individuals by prioritizing language-based communication at the expense of non-facilitated communication (e.g., behaviors) (Chan & Nankervis, 2014).

If autistic individuals cannot communicate in a way that would allow their participation in a study, informants can assist with completing study measures, provided their responses are analyzed and reported separately from self-report (e.g., Koffer Miller et al., 2022; Kerns et al., 2022). Researchers can also seek information from both the autistic individual and an informant to ensure accuracy and completeness (Russell et al., 2019; Nicolaidis et al., 2019). However, participants may be reluctant to make sensitive disclosures in the presence of supporters, especially disclosures related to mistreatment by the supporter, because of justified concerns of retaliation (McDonald et al., 2015).

The risk of retaliation is particularly concerning because the majority of autistic individuals have experienced violence; one review found a pooled prevalence of 84% (Trundle et al., 2023). Additionally, around 16% of autistic adults have received a diagnosis of posttraumatic stress disorder (PTSD), and 44% meet PTSD criteria (Quinton et al., 2024). Autistic individuals with co-occurring ID/LI are particularly at risk (McDonnell et al., 2019; Kildahl & Helverschou, 2024) despite being under-represented in research on violence (Cooke et al., 2024) and PTSD (Rumball 2019; Quinton et al., 2024). Thus, despite the ethical challenges, more research is necessary in order to appropriately recognize and respond to violence and its consequences.

Models for research on sensitive topics can be found in research on violence against children (e.g., Martins & Sani, 2020) and adults with ID (e.g., McDonald et al., 2015; Ribenfors & Blood, 2023), which also grapple with participant ability to consent, potential caregiver conflicts of interest, and unique researcher-participant power dynamics. During the consent process, framing violence studies as focused on potentially distressing experiences may sufficiently prepare participants without alerting supporters to the specific focus on victimization. Subsequently, researchers should consider strategies that allow a participant to disclose information in a private environment or with the assistance of impartial and appropriately trained research staff. If active involvement of a known supporter is required, screening them may be needed to ensure participants’ safety.

Disclosure of abuse or victimization may trigger a researcher’s duty to report. If the team anticipates this outcome, discussion of the duty to report should be included within the consent process. Furthermore, the research team may need to evaluate the risks and benefits of involving the police, protective services, or a safe caregiver. Providing questions ahead of time may allow participants to better process what is being asked of them and decide what they want to share. In some cases, the research team and participants may collaborate to determine an appropriate response if abuse is disclosed (Ribenfors & Blood, 2023; Sammet Moring et al., 2019).

Finally, there may be concerns that research about emotionally intense topics is too distressing for autistic individuals with ID/LI. However, these concerns may be unfounded and ignore potential benefits of inclusion; participants in trauma studies experience low to moderate stress compared to moderate to high benefits (Jaffe et al., 2015). There is evidence that adults with ID view others gatekeeping them from research participation as more harmful than the risk of research causing negative emotions (McDonald et al., 2017). Negative outcomes can be further minimized by providing a list of resources for help-seeking or by offering post-study debriefing or follow-up care (Ribenfors & Blood, 2023).

Fairness

At all stages of the research process, effective and respectful inclusion of a wide spectrum of autistic individuals can be strengthened through partnership with autistic adults. Participatory approaches can highlight unique risks and needs for autistic individuals; contribute to community empowerment; and protect fairness and equity by giving autistic individuals the opportunity to raise concerns about the research topic, approach, and distribution of risks and benefits (Nicolaidis et al., 2019). However, participatory approaches must be mindful of who is invited to contribute. Seeking study feedback only from communities in which most members have low support needs and do not have ID/LI may unintentionally reduce research inclusivity.

Balance of Benefits and Burdens and Conclusion

There are many ethical considerations relevant to the inclusion of individuals with ID/LI in autism research. This research can be burdensome and create challenges around recruitment, informed consent, accurate measurement, and protecting privacy and confidentiality. Nonetheless, researchers must strive to be inclusive. The under-representation of autistic individuals with ID/LI in research has widespread impacts on the availability and provision of appropriate support. Researchers are encouraged to reflect on their current practices and consider changes to increase representation of the full autism spectrum. To further protect and support vulnerable autistic participants, researchers can seek insight from ethicists, organizations such as AASPIRE, or autistic consultants through participatory research processes.

Acknowledgements:

The authors thank the autistic partners who provided feedback on and gave recommendations for this manuscript: Dorothy Ackland, “Lia”, and “Tess.”

Funding:

This research was supported by the National Institute on Alcohol Abuse and Alcoholism of the National Institutes of Health under award number T32AA031818, awarded to the National Center for Sexual Violence Prevention within the Mark Chaffin Centers for Healthy Development in the School of Public Health at Georgia State University. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Conflicts of interest: The authors have no conflicts of interest to report for this manuscript.

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