How To Reduce Stigma In Autism Research Through Autistic Voices

In recent decades, autism research has seen unprecedented growth. The number of published articles on autism has increased tenfold, and funding for autism studies has expanded significantly.

Despite this surge in research activity, many autistic individuals feel that the outcomes of this research fail to reflect their lived experiences or meaningfully improve their quality of life.

This disconnect highlights a persistent issue in the field: the presence of stigma in autism research.

Stigma in this context refers to negative attitudes, misconceptions, and discriminatory practices that can be embedded in research approaches, methodologies, and interpretations.

To address this critical issue, there is a growing call within the autism community and among progressive researchers to include autistic voices more meaningfully in the research process.

This article explores the problem of stigma in autism research and discusses how the inclusion of autistic perspectives can lead to more respectful, relevant, and impactful studies.

The Problem of Stigma in Autism Research

Historically, autism research has been dominated by non-autistic researchers, often approaching the subject from a medical or deficit-focused perspective.

This approach has led to several problematic outcomes:

1. Stigmatizing language and concepts: Research papers and discussions often frame autism primarily as a disorder or impairment, rather than a different way of experiencing the world. For example, terms like “disorder,” “impairment,” or “deficit” are frequently used, which can reinforce negative stereotypes and myths.
2. Misaligned research priorities: Studies often focus on areas that researchers or funding bodies deem important, which may not align with the needs and priorities of autistic individuals themselves. As one autistic advocate noted, “We’ve been among the community. Everyone says, ‘oh, you’re not autistic, you can’t possibly be autistic.’ Why? Because I’m holding down a job, I don’t make them uncomfortable, mostly, during social interactions with them. I have a family, I’ve been married for 37 years. Surely, I can’t possibly be autistic. But I am.”
3. Exclusion of autistic perspectives: Autistic individuals are often treated as subjects of research rather than active participants or collaborators in the research process. This exclusion can lead to misinterpretation of data and missed insights.

Dr. Damian Milton, an autistic academic, describes this problem as the “double empathy problem,” where non-autistic researchers may struggle to fully understand and represent autistic experiences.

As someone who is autistic and also reads and reviews a lot of autism research, I have picked up on some ‘red flags’ that shake my trust.

For example, research that intends to find a way to ‘treat’ autism is a big red flag. As autism is not a disease, it does not need to be cured. A lot of research that attempts to treat autism actually encourages masking behaviors, which can actually be detrimental to autistic individuals, such as causing burnout and a low sense of identity.

Likewise, research that solely focuses on the experiences of autistic individuals from the perspectives of their caregivers or teachers is also questionable. While it can be important to obtain multiple perspectives, excluding autistic perspectives completely without finding a way to communicate with them reduces the accuracy of data.

In general, language that researchers use that stigmatize autism can contribute to the idea that autism is a bad thing.

There have been instances where I have disclosed my autism diagnosis to people, and they have responded in disbelief or as if I have told them I have a terminal illness instead of celebrating that I now understand more about myself.

If autistic individuals are not involved in autism research, this can only perpetuate a lack of understanding and fail to address the real needs of the autism community.

The Value of Autistic Voices in Research

Including autistic perspectives in research brings several crucial benefits that can help combat stigma and improve the quality and relevance of autism studies:

Experiential expertise

Autistic individuals possess unique insights into their own experiences that can inform research questions, methodologies, and interpretations.

As one autistic individual stated, “The real understanding of how it feels on all levels, physically, emotionally, psychologically, I think can sadly only really be fully appreciated by another autistic person. Unless you’ve actually lived through it, it can be hard to comprehend the impact that it has on your whole being.”

Example: For a study on sensory experiences in autism, an autistic researcher may suggest including questions about the positive aspects of sensory sensitivity, leading to discoveries about enhanced perceptual abilities that might have been overlooked by non-autistic researchers focusing solely on sensory challenges.

In a study by Gillespie-Lynch et al. (2017), autistic researchers provided insights that led to the development of an online training program to reduce stigma towards autism. Their lived experiences helped shape the content to be more accurate and respectful.

Challenging assumptions

Autistic involvement can help identify and correct biases held by non-autistic researchers. For example, what a non-autistic researcher might interpret as a deficit could be understood differently by an autistic individual who has lived that experience.

Example: For a study on social interactions, non-autistic researchers may initially interpret reduced eye contact as a sign of disinterest. However, autistic collaborators can explain that for many autistic individuals, reduced eye contact actually allows for better focus on the conversation, challenging the assumption that eye contact is always necessary for effective communication.

Milton (2012) discusses how the “double empathy problem” challenges assumptions about social interaction difficulties in autism, suggesting that communication breakdowns are bidirectional rather than solely due to autistic deficits.

Improved relevance

Research guided by autistic input is more likely to address issues that matter to the autism community. As noted in a UK study, there is often a mismatch between what autistic people want to be researched and what is actually being studied.

Example: For a study on communication interventions, researchers may initially focus on teaching neurotypical conversation skills to autistic children. After consulting autistic adults, the focus shifted to exploring alternative communication methods, such as text-based or AAC devices. This change can lead to interventions that are better aligned with autistic communication preferences, resulting in more effective outcomes for the children involved.

The UK study by Pellicano et al. (2014) found that while researchers often prioritized studies on biological causes of autism, autistic individuals and their families were more interested in research on life skills, educational strategies, and adult services. This led to a shift in funding priorities to better align with community needs.

Enhanced validity

Including autistic perspectives can lead to more accurate interpretations of data and more valid conclusions.

For instance, an autistic researcher might provide insights into why participants responded in certain ways during a study, leading to more nuanced analysis.

Example: For a study on autistic burnout, autistic researchers may identify subtle signs of burnout that non-autistic researchers had missed, such as increased difficulty with task switching or heightened sensory sensitivities. This can lead to a more comprehensive and accurate understanding of the burnout phenomenon in autism. 

In a study by Nicolaidis et al. (2019), autistic adults’ involvement in developing healthcare tools led to more accessible and relevant materials, enhancing the validity of the research for its intended audience.

Meaningful inclusion of autistic perspectives can lead to numerous other positive outcomes:

1. Enhanced research quality and validity: Autistic involvement can lead to more accurate interpretations and more robust research designs.
2. Increased community trust and engagement: When autistic individuals see themselves represented in research teams, they may be more willing to participate in and trust the outcomes of studies.
3. More relevant and impactful outcomes: Research that addresses community-identified priorities is more likely to produce results that can positively impact autistic lives.
4. Empowerment of autistic individuals: Involvement in research can be empowering for autistic participants. As one participant in a participatory study noted, “I don’t think I’d ever been asked to explain myself and to actually be heard… having someone want to know my story and have that validated was actually helpful.”

Dr. Elizabeth Pellicano, a leading researcher in participatory autism research, emphasizes the importance of this approach: “By spending time with autistic people, without an agenda or specific idea of what the researcher wants to do, we can build research questions on autistic input from the very outset.” (Fletcher-Watson et al., 2019)

Strategies for Meaningful Inclusion

To combat stigma and improve research quality, several strategies can be employed to include autistic voices meaningfully:

1. Participatory research methods: This approach involves autistic individuals throughout the research process, from setting priorities to disseminating results. For example, the “Know Your Normal” project in the UK involved autistic volunteers as co-researchers in a study on mental health in young autistic adults.
2. Co-production: This strategy creates true partnerships between autistic and non-autistic researchers, sharing decision-making power. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is an excellent example of this approach, where autistic adults and academic researchers work together as equal partners.
3. Supporting autistic researchers: Institutions should actively support and promote autistic individuals in pursuing research careers. This includes providing necessary accommodations and challenging traditional academic structures that may create barriers.
4. Inclusive design: Ensure research materials and processes are accessible and respectful of autistic needs and preferences. This might include providing alternative communication methods, allowing breaks during interviews, or adapting sensory environments.

Co- interview approach

This involved implementing a co-interview procedure for qualitative research, where at least one interviewer is an autistic researcher.

Kaplan-Kahn & Caplan (2023) suggested several benefits for this approach:

• Reduced bias: Collaboratively developing interview protocols can decrease neurotypical biases in question formulation.
• Increased accessibility: Autistic researchers can help ensure questions are clear and understandable for autistic participants.
• Enhanced rapport: Autistic interviewers may foster increased comfort and authenticity in participants’ responses.
• Diverse perspectives: Having both autistic and non-autistic interviewers can lead to more comprehensive follow-up questions and data interpretation.

The researchers go on to suggest how to implement this approach effectively:

1. Collaborate on interview protocol development
2. Establish clear roles and procedures for co-interviewers
3. Provide participants with interview information in advance
4. Allow for accommodations to reduce sensory overload
5. Conduct thorough debriefs after interviews
6. Include autistic researchers in data analysis

By incorporating these strategies, particularly the co-interview approach, researchers can create more inclusive and effective qualitative studies that better represent autistic experiences and perspectives.

Challenges and Considerations

While inclusion is crucial, it’s not without challenges:

1. Power dynamics: Ensuring autistic involvement is genuine and not tokenistic requires constant vigilance and self-reflection from research teams.
2. Diversity: The autism spectrum is vast, and representing the wide range of autistic experiences can be challenging but is essential for comprehensive research.
3. Balancing perspectives: Navigating potentially conflicting viewpoints between autistic and non-autistic team members, or even within the autistic community, requires skill and patience.
4. Institutional barriers: Traditional research structures and funding models may not easily accommodate participatory approaches, requiring advocacy and systemic change.

Conclusion

Combating stigma in autism research requires a fundamental shift in how we approach and conduct studies.

By meaningfully including autistic voices at every stage of the research process, we can create more respectful, relevant, and impactful research that truly benefits the autism community.

Researchers, institutions, and funders must commit to this inclusive approach to create a more equitable and effective future for autism research.

As Dr. Sue Fletcher-Watson, a researcher advocating for participatory methods, states: “Nothing about us without us… autistic people should be centered in all conversations regarding autism.”

When evaluating autism research, look for these positive indicators or “green flags”:

• Involvement of autistic co-researchers throughout the process, from design to publication
• Use of respectful, non-stigmatizing language that frames autism as a difference rather than solely as a deficit
• Research priorities that align with the expressed needs of the autism community
• Inclusion of diverse autistic voices across the spectrum
• Autistic perspectives included in data analysis and interpretation
• Findings shared in accessible formats for the autism community

By being discerning consumers of autism research, we can collectively promote and support studies that are truly inclusive, relevant, and beneficial to the autistic community.

This shift in awareness can drive meaningful change in how autism research is conducted and applied, ultimately leading to more impactful and respectful outcomes.

References

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493. https://doi.org/10.1177/1362361318757048

Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., … & Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in psychology, 8, 438. https://doi.org/10.3389/fpsyg.2017.00438

Kaplan-Kahn, E. A., & Caplan, R. (2023). Combating stigma in autism research through centering autistic voices: A co-interview guide for qualitative research. Frontiers in Psychiatry, 14, 1248247. https://doi.org/10.3389/fpsyt.2023.1248247

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008

Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., … & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523

Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756-770. https://doi.org/10.1177/1362361314529627

Pellicano, E., Lawson, W., Hall, G., Mahony, J., Lilley, R., Heyworth, M., … & Yudell, M. (2022). “I Knew She’d Get It, and Get Me”: Participants’ Perspectives of a Participatory Autism Research Project. Autism in Adulthood, 4(2), 120-129. https://doi.org/10.1089/aut.2021.0039

Further information

Checklist for Autism-Friendly Research by Autistica

The Autism Research Toolkit by Autistica