Why a research-based approach from autism self-advocates is the best way to effect positive changes for autistic inclusion in academic studies

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Since its conception, Autystowo has strived to provide the most reliable and science-based information on autism. Everything we publish is selected, collated, and written by autistic people. Autystowo isn’t the only autism self-advocacy page in Polish; far from it. However, we have developed a unique focus on exclusively peer-reviewed scientific studies through the lense of autism-self advocacy. This is not usual in that research into autism is fraught with issues, and diagnostic tools remain biased, so much of the community developed content centres around personalised accounts. Here I will explain what the legitimate issues with academic research into autism are, and why despite this, the approach we take can contribute to the betterment of our collective autistic lives through the improvement of the studies themselves.

[The image shows someone’s desk with a laptop, an additional screen, keyboard, stationary, shelves, bottles, and a whiteboard above] 

What’s wrong with autism research?

The first broader issue lies in what is being researched. The majority of studies into autism investigate the genetic factors (Pellicano 2020). This supports the medical model of disability, that focuses on the deficits of autism and presents it as something outside of the norm, needing to be fixed (Pellicano & Den Hauting 2022). Often, autistic individuals who partake in these studies feel like ‘guinea pigs’ (den Houting, J. et al. 2021; Cascio et al 2020). Because of the common misconceptions and biases in the society as a whole, the results are then misused to further the discrimination of autistic people by fueling the fear of ‘developing autism’. For example, the study into the correlation between screen time in toddlers and ‘developing autistic traits’ has done rounds on social media in the following way:

[The image shows a screenshot of an Instagram post by @ carinacastrofumeronp with a photo showing a toddler using a tablet and a caption in Spanish: Time in front of screens spent by children 1 and younger and autism spectrum at 3 years old] 

Fig 1: A prominent Argentinian Instagram influencer and therapist uses the study to suggest that screen time in toddlers might be the reason for aggravating ‘autism symptoms’, using autism as a scarecrow to sell her online course about screen time in toddlers.

Secondly, the problem is how the research is being conducted. Many studies are parent-reported, which means that they rely on the external opinion and interpretation of a neurotypical person. Also, the majority of studies do not adjust for diversity  in the focus group, like in gender expression. This is especially problematic, given that females have been historically marginalised in autism studies (Rynkiewicz et al 2019).

Additionally, there seems to be a higher number of non-binary and trans individuals in the autistic community (Sala et al 2020) as compared to the general public, but very few studies strive to include or account for this diversity (Lisback et al 2021). Lastly, most studies ignore the autistic community’s preference for identity-first language, or the rejection of functioning labels (Pellicano & Den Hauting 2022). While from the outside the language issues might seem trivial, they are especially problematic because they add to the distrust of academic research in the autism community. 

Despite a substantial growth in funding for autism studies, these two aforementioned issues contribute to the lack of research into anything that can actually benefit the autistic community (Pellicano & Den Hauting 2022). We talked about this, for example, in our podcast episode on additional diagnostic criteria for autism, where I pointed out that there are no studies into hyperempathy, despite many autistic individuals reporting this experience. That, of course, stems from the focus on the perceived deficits like lowered empathy (ibid.). 

So why do we still care about academic research?

The natural question that might appear here is why bother with academic research then, especially in the context of the autism community that is now widely connected online and can be a brilliant source of information for everyone. The answer is twofold.

First, overall, the rigorous academic method is the best we have to arrive at some objective truth. It is plural, methodological, and subject to scrutiny (Gonzales 2020). In the light of the aforementioned issues, it’s understandable that there are legitimate concerns about autistic research, especially given the issues concerning the ethics of biomedical research as a whole (Brown 2010). However, science, overall, simply works (Gimbel 2010). And while social media and community can be a great support to neurodivergent individuals, the lack of scientific discipline may lead to misleading results. For example, a recent study has shown that the very popular TikTok videos on ADHD can be misleading (Yeung & Abi-Jaoude 2022).

Secondly, academic research is what determines our existence in a myriad of ways. Diagnostic Manuals such as the DMS (Black 2014) are based on new developments in research. Also, any practitioners we go to, such as neurologists, psychiatrists, and therapists base their practices on the published research.

Thus, the goal should be to reform the approach researchers have to autism research, not to reject the whole academic method.

What can be done about this?

It won’t surprise anybody that the burden of proof, or action, lies mostly on the autistic community. It is the autistic activists that have been effecting this change for quite a while now. This was started by the switch to the social model of disability, and the introduction of the notion of neurodiversity (Pellicano & Den Hauting 2022). 

The pressure of the autistic community, united and connected by social media has already bore fruit. For example, there has been a push for the studies on the cost of masking, known broadly as ‘autistic burnout’. After the initial investigation was conducted by autistic researchers (Raymaker 2020), some good studies were published in recent years (see Higgins et al 2021; Raymaker et al 2020). Increasingly, many of these researchers are autistic themselves. And many, like Jac Den Hauting or Dr Joanna Lawicka in Poland, became autism researchers precisely because of their own diagnoses (see their respective TED talks). 

How Autystowo works 

Autystowo’s creed is ‘about autism: scientifically and factually’. As mentioned above, our specific focus is to pass on academic research supported by or contrasted with real lived experience. In our podcast and articles, we make a clear distinction between the scientific sources and personal experience of the autistic individuals, by clearly referencing and linking these studies. We also make sure to highlight where the research falls short, as in the case of the studies into empathy. The multimodality was dictated by the needs for inclusion, especially for neurodivergent audiences or those with other mixed abilities. We also have a glossary with the key words related to autism, that might be unknown but regularly appear in our content. 

We chose to publish in Polish, despite both creators being bilingual. Due to its political and economical transformations Poland’s diagnostic criteria and approach to autism is still behind in inclusivity and approach. For instance, Poland still has not switched to the newest ICD 11 that merges Asperger’s Syndrome with Autism Spectrum Disorder. Also, the access to academic research is restricted by price and other factors (Berlatsky 2014) as well as the language barrier since most scientific journals are in English. To add to this, Poland has a high number of antivaxxers (Pempel 2022) who still believe that vaccines cause autism, or that autism can be cured with diets or detox.

How we can all work to achieve better outcomes

Autystowo is aimed at two main groups of people. The outcome for each is to be somewhat different. The first group are autistic people with and without diagnosis, as well as their parents, carers, or close ones. The main benefit we hope to bring is  in-depth, reliable information on autism that will bring about positive change.  Diagnostic criteria can vary because each region has its own diagnostic manual. This is why Autystowo always includes information both on DSM-5 and the ICD that is used in Poland.

Additionally, the diagnostic criteria are still incredibly narrow, and often not inclusive (Lockwood et al 2021). Many women get diagnosed far later in life, or misdiagnosed with other conditions or mental disorders (Rynkiewicz et al; Pellicano et al 2020). Anecdotally, from our presence in the community, we also see that there is a huge problem with impostor syndrome. In short, we want you to be able to better assess if you or your child needs a diagnosis. This also goes for all the adults who often ask on forums if ‘there’s a point of even getting a diagnosis at my age’. Consider that even if it is not particularly important for an individual at the stage of their life, it can contribute to important statistics and research on autism that will make a meaningful impact on the lives of others (Lisback et al 2021).

A valid diagnosis can help us further our knowledge on autism. For those who already have a diagnosis, we provide in-depth information on each aspect and symptom of autism, which health care providers might not give. This will lead to better education, healthcare, and self-advocacy in the workplace. Such self-awareness is also important for eradicating one’s own internalized biases (Higgins et al 2021). Lastly, the analysis of research we present can help to navigate situations where research is involved and misinterpreted or not seen in its proper context, for example, when you’re faced with comments like ‘studies show autistic people have no empathy’.

Chłopiec z książką
Boy with a book. Source: Pixabay

The second group are researchers and practitioners who deal with or treat autistic individuals. Practitioners such as therapists and doctors must rely on scientific peer-reviewed studies in their practice. Thus, presenting such data in light of the needs of autistic communities can inform them for the benefit of their patients. Also, we hope that as a result practitioners will voice the need for a change in research, both in their methods and content.

Furthermore, on many occasions, practitioners in training, such as psychology students, contact the community to participate in surveys for their theses or other research. Often, these include non-inclusive approaches that the prospective practitioners picked up from research and/or their studies. We understand that these students are often caught in a complex situation of relying on the existing research, the university’s approach to the academic work, the unfortunate attitude of focusing on just passing an assignment, and the general murkiness of scientific methodologies (Crotty 1998). Our approach to the key topics about autism provides a way to navigate and still reference these studies while also respecting the community. The public availability of our content also means that anyone can send links to our articles and podcasts together with their reference lists.

Finally, we need to engage with the researchers themselves to form a dialogue. The classic format of academic journals and peer-reviewed studies goes back to the pre-internet times of print. Modern technology allows for more collaborative work on academic research (Fitzpatrick 2011), where papers can be drafted and written publicly, subject to comments, feedback, and scrutiny. Right now there is no widespread attempt to democratise and pluralise academic writing as Fitzpatrick envisages. But as Watermeyer (2011) points out, public engagement is key for establishing the value of academic research. As he writes 

Dialogue as a process of public engagement is arguably the most effective means to make explicit impact types and trails.

(Watermeyer 2011 pp. 121)

As the ‘relevant stakeholders’ (ibid.), therefore, we embark on engaging with autism research. Similar efforts which establish dialogue have also sprung up elsewhere, such as the formation of the advocacy page Neuroatypowe. Also, while the number of autistic researchers working on autism studies increase, they are still in the minority. Thus, we must strive to get the neurotypical research majority on board with the autistic perspective.

Studies by Pickard et al (2022) showed that scientists interested in furthering a more participatory model for autism research, see dialogue with the community as key, but fear potential tensions. This is why Autystowo never outright rejects peer-reviewed studies. Rather, we point out issues and ways in which the topic should be addressed differently in the future, hopefully leading to a collaborative approach which involves autistic self-advocates (Cascio et al 2020). In turn, as research moves towards better inclusion, it will also garner more trust from the skeptical autistic community.

Into the future

We too share a distrust of autism research. Studies routinely focus on deficits through the medical model of disability. We must absolutely acknowledge these fears and legitimate complaints. Nevertheless, as autism self-advocates, we feel that we have to engage with the academic studies and offer a way to mediate between the current approach and knowledge, and the requests and desires of the community to build a dialogue resulting in a participatory model for research. We have focused on summarising, mediating, and scrutinizing the research in a constructive way. It has already garnered the support of the autistic community. How far it will lead us remains to be seen. Undoubtedly, this approach and its execution will evolve, as it should.

Sources & References:

Berlatsky (2014) Why Isn’t Academic Research Free to Everyone? – A conversation with Martin Paul Eve The Atlantic Technology: https://www.theatlantic.com/technology/archive/2014/11/why-isnt-academic-research-free-to-everyone/382917/ ACCESSED 17 APRIL 2022

Black, Donald W., and Jon E. Grant. (2014)DSM-5® Guidebook : The Essential Companion to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Publishing. ProQuest Ebook Central

Brown, J. R. (2010) ‘ One-Shot science’ in Radder, H (ed.) 2010, The Commodification of Academic Research : Science and the Modern University, University of Pittsburgh Press, Available from: ProQuest Ebook Central. [10 April 2022].

Cage, E., Troxell-Whitman, Z. (2019) Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults. J Autism Dev Disord 49, 1899–1911 (2019). https://doi.org/10.1007/s10803-018-03878-x

Cascio, M. A., Weiss, J. A. and Racine, E. (2020) ‘Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities’, Autism, 24(7), pp. 1676–1690. doi: 10.1177/1362361320918763.

Crotty, M. (1998) Introduction: The Research Process. In, The foundations of social research : meaning and perspective in the research process. London: Sage

den Houting, J. et al. (2021) ‘‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research’, Autism, 25(1), pp. 148–163. doi: 10.1177/1362361320951696.

Fitzpatrick, K. (2011). The Digital Future of Authorship: Rethinking Originality. Culture Machine, 12.

Gimbel, S. (2011) Exploring the Scientific Method: Cases and Questions, University of Chicago Press

Gonzales, W. J. (2020)  ‘Levels of Reality, Complexity, and Approaches to Scientific Method’ in Editors: Gonzalez, W. J.  (2020) Methodological Prospects for Scientific Research From Pragmatism to Pluralism 

Higgins, J. M. et al. (2021) ‘Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout’, Autism, 25(8), pp. 2356–2369. doi: 10.1177/13623613211019858.

Libsack, E.J., Keenan, E.G., Freden, C.E. et al. (2021) A Systematic Review of Passing as Non-autistic in Autism Spectrum Disorder. Clin Child Fam Psychol Rev 24, 783–812 . https://doi.org/10.1007/s10567-021-00365-1

Lockwood Estrin, G., Milner, V., Spain, D. et al. (2021). Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review. Rev J Autism Dev Disord 8, 454–470 https://doi.org/10.1007/s40489-020-00225-8

Pellicano E, Lawson W, Hall G, et al (2020) Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodologyBMJ Open 2020;10:e037968. doi: 10.1136/bmjopen-2020-037968

Pellicano E. (2020). Commentary: Broadening the research remit of participatory methods in autism science – a commentary on Happé and Frith (2020). Journal of child psychology and psychiatry, and allied disciplines, 61(3), 233–235. https://doi.org/10.1111/jcpp.13212

Pellicano, E & den Houting, J 2022, 'Annual Research Review: shifting from ‘normal science’ to neurodiversity in autism science’, Journal of Child Psychology and Psychiatry and Allied Disciplines, vol. 63, no. 4, pp. 381–396. https://doi.org/10.1111/jcpp.13534

Pempel, K (2022) In Vaccine-shy Poland COVID deaths top 100 000 https://www.reuters.com/business/healthcare-pharmaceuticals/polands-total-covid-19-death-toll-passes-100000-2022-01-11/

Pickard, H. et al. (2022) ‘Participatory autism research: Early career and established researchers’ views and experiences’, Autism, 26(1), pp. 75–87. doi: 10.1177/13623613211019594.

Raymaker, D. (2020) Transition to Adulthood – Autistic Burnout and the Costs of Coping and Passing: Seattle CHildren’s Autism Centre: https://www.youtube.com/watch?v=KRmKuUkz1Ww&t=4s ACCESSED 04/01/2022

Raymaker, D. Teo, A.R. Steckler, N.A.  Lentz, B. Scharer, M. Delos Santos, A. Kapp, S. K. Hunter, M. Joyce, A.Nicolaidis. C. (2020) Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew: Defining Autistic Burnout; Autism in Adulthood..132-143.

Rynkiewicz, A., Janas-Kozik, M., & Słopień, A. (2019). Girls and women with autism. Dziewczęta i kobiety z autyzmem. Psychiatria polska, 53(4), 737–752. https://doi.org/10.12740/PP/OnlineFirst/95098

Sala, G., Pecora, L., Hooley, M. et al. As Diverse as the Spectrum Itself: Trends in Sexuality, Gender and Autism. Curr Dev Disord Rep 7, 59–68 (2020). https://doi.org/10.1007/s40474-020-00190-1

Watermeyer, R. From Engagement to Impact? Articulating the Public Value of Academic Research. Tert Educ Manag 18, 115–130 (2012). https://doi.org/10.1080/13583883.2011.641578

Yeung, A., Ng, E., Abi-Jaoude, E. (2022). TikTok and Attention-Deficit/Hyperactivity Disorder: A Cross-Sectional Study of Social Media Content Quality. The Canadian Journal of Psychiatry. https://doi.org/10.1177/07067437221082854

IMAGES: all images taken by the author unless otherwise specified.

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