With the silence of a thousand cries: extremes of autistic advocacy

Abstract

In the past year, I have observed a growing trend toward extremes of autistic civil rights advocacy, at least partially characterized by disdain for scientific research and knowledge alongside a preference for lived experiences. This concerns me, an individual on the autism spectrum and someone who desires to help autistic individuals through the psychological study of autism. Hence my intent here: to discuss and bring attention to this situation. In so doing, I hope to create civil and respectful dialogue on the subject. I will conclude by discussing implications and potential actions which might bring about positive outcomes.

Keywords:

• Autism spectrum conditions
• science
• respect
• in-group/out-group conflict
• social activism

Introduction

As an autistic college student and autism researcher, I actively engage with social media channels frequented by individuals on the autism spectrum. Recently, I have observed a shift in these communities, from conversation generally centered around daily life and peer support toward discussion of civil rights activism and advocacy. This is notable because of the discussion’s heated rhetoric.

In this environment, there has been a growing disdain for scientific knowledge, and a growing hostility toward autism professionals and researchers, in favor of autistic lived experiences. This concerns me because I want to help autistic individuals through the psychological study of autism spectrum conditions. Thus, my intent here is to bring attention to, and create respectful and civil dialogue around, what I see as a serious and growing problem: a move toward an extreme version of autistic self-advocacy/advocacy.

Extremes of autistic advocacy

I am acutely aware of the stigma surrounding autism, having experienced bullying, manipulation, and ostracism first-hand. I have been discriminated against and am often ignored both professionally and personally, even by people who claim to support inclusivity and diversity. With this personal history, I am passionate about autism-related advocacy, and appreciate others’ passion for the subject.

I have observed, however, that many on the spectrum, through their advocacy, are moving the autistic community away from progress, to a place of in-fighting and negativity. In witnessing the autistic push for recognition, and as cries for ‘nothing about us without us’ grow ever louder, I see the creation of a hurtful, quickly widening divide which is only impeding positive change. This divide joins others, including a debate among autistic individuals on the use of identity-first and person-first language.

Language about autism

The autism language debate underlies deeper problems of ‘us-against-them’ in-group/out-group conflict. Currently, people on both sides often refuse inter-group interactions. In my view, it should not matter whether one is referred to as autistic or as a person with autism. Recognition of essential humanity, self-worth, and intrinsic value lies not in language, but in being comfortable with and able to identify with one’s condition. Therefore, while respecting others’ views, I am both autistic and a person with autism. The important thing is that each individual is happy – so long, of course, as they themselves are not attacking others in pursuit of this happiness (e.g. disrespecting/attacking those who prefer different reference language).

One reason language issues exist is a fundamental lack of respect among autistic individuals, regarding differences of opinion and viewpoint. The resulting tension lends itself to autistic pushback against science, and to the growing trend for autistic individuals to attack researchers (who are predominantly non-autistic) while viewing their own lived experiences as more valid and credible than formal scientific explanation. I understand the anger levied at those set on eliminating autism – a view incompatible with the ideas of neurodiversity – and how contempt could grow from such factors, and others. However, to set oneself entirely against science is folly, unproductive of positive change, and another example of in-grouping/out-grouping.

Lived experience and science

Lived experience stands alongside learning as a unique, valid, and extremely important form of expertise. Even so, it is highly subjective by nature and, therefore, cannot stand against science, which is based on rigorous methodologies and measurements. Autism is widely acknowledged as existing along a continuous spectrum. While commonalities exist, so much individual variation abounds that personal, lived experience is not overly generalizable to the wider autistic population. It is difficult to build theories – cogent frameworks for the explanation of information, whether they are formally scientific or informally personal – from such subjective information on its own.

This is where science has utility: explaining things that occur in the world through structured frameworks. Experiments, following carefully specified criteria and taking into account various perspectives (including lived experiences), are designed to explore research questions and predictions with respect to falsifiability. With repeated observation/measurement, results begin to inform an objectively obtained (i.e. ‘truthful’) body of work, by which common knowledge is advanced.

Researchers should collaborate with autistic individuals. Conclusions drawn from lived experience vitally assist and even expand the scope of scientific inquiry. I am, therefore, thrilled about the emergence of a research agenda informed directly through partnership with autistic individuals (thanks to efforts by the Participatory Autism Research Collective and others). Delight notwithstanding, I have observed an additional troubling trend whereby autistic individuals presume to limit the breadth of work in which researchers engage. Balance is needed. Research should focus on autistic needs and the development of individual supports, but, by the same measure, exploration and investigation beyond these targeted areas (e.g. in support of theory) should not be limited. Research addressing many different areas is crucial to the overall process of generating a greater understanding of autism.

Hostility toward autism research

There is an atmosphere of vitriolic hostility around autism research, including toward researchers themselves. Indeed, perhaps the most notable case involves Simon Baron-Cohen, originator of the theory of mind (ToM), empathizing–systemizing, and extreme male brain hypotheses of autism. Baron-Cohen has faced a great deal of animosity in constructing theoretical views of autism.

It was initially proposed by way of a have/have-not dichotomy that autistic individuals are impaired in their capacity for ToM, which enables intuitive inference of mental states (e.g. thoughts, feelings, knowledge, desires, intentions) in the self and others through ‘mindreading’ (Baron-Cohen 2001). This supposed impairment in the ability to cognitively empathize was initially described (Baron-Cohen, Leslie, and Frith 1985, 38, 39 and 44) as ‘circumscribed cognitive failure,’ ‘cognitive dysfunction,’ ‘cognitive deficit,’ ‘social disability,’ and a ‘striking poverty.’ Baron-Cohen stated later that ‘theory of mind remains one of the quintessential abilities that makes us human. … [ToM] difficulties seem universal among [autistic] individuals’ (2001, 169). Such wording created the hurtful stereotype that autistic people lack empathy. It should be recognized that ToM was formulated at a time when language in autism focused on deficiency. Disability theorists have since progressed the literature from a primarily pathological approach, favoring instead language which considers strength and weakness and, moreover, differences of ability instead of total disability. Context, then, is critical; theoretical perspectives evolve and particular iterations may only hold historical value.

The empathizing–systemizing and extreme male brain theories (Baron-Cohen 2010) seek to explain the social and non-social features of autism spectrum conditions, and why autism is more prevalent in men than women, putting forth the ideas that autistic individuals are stronger in ‘systemizing’ (orientation toward attention to detail) than in their ability to mindread, and that autism is an ‘extreme of the male brain’ due to systemizing. The extreme male brain theory angers many autistic people, especially those identifying as neither male nor female. Many (understandably) feel quite literally dehumanized and ‘othered’ by these theories and I, too, disagree with the aforementioned statements about autistic ToM and the exclusively masculine gendering of the autistic brain. Still, I respect the theories for what they are and remain open-minded about their ability to explain autism because one does not have to agree with the perspective of any particular person or theory regardless of the person’s opinion or the statements and conclusions of the theory.

I am inclined to believe the scientific evidence for ToM as a valid psychological construct and support the theory in spite of the early language it used. This is because it makes sense to me theoretically and because I have observed multiple levels of mindreading ability in my own and others’ lives. I believe the evidence for enhanced systemizing in autism spectrum conditions for the same reasons. While it is perfectly acceptable to disagree with my logic, it is not okay to attack me if, or because, my views differ from your own. Some will undoubtedly see bias in this disclosure, but, to be clear: I work with Baron-Cohen and, considering available evidence,¹ disagree with statements that he harbors ill-will toward autistic individuals. Open-mindedness has resulted in fruitful collaboration. One project underway is a revision of the historical, dichotomous model of autistic ToM, updated through the lens of the neurodiversity paradigm.

I do not believe scientific theories are mutually exclusive. Each can be interpreted individually, to add depth to one’s understanding of a topic or best inform the situation. Some theories complement each other; others provide differing accounts of the same concept. The empathizing–systemizing theory can coexist with central coherence theory (autistic individuals have strength in local, detail-oriented information processing at the expense of weaker global, big-picture processing and overall context discernment; Frith 2003). ToM can coexist with the theory of double empathy (non-autistic people have generally just as much trouble cognitively empathizing with autistic people as autistic people do with non-autistic people; Chown 2014; Milton 2012). Belief in any theory depends on each person’s unique interpretation of the presented evidence, and differences of belief should not be cause for attack in any circumstance.

Scientific theories are not absolute fact. Nothing in science is ever ‘proven’ and no single data-set is ever ‘good enough.’ This is why replication is necessary for any finding to gain traction, and why even ‘established’ findings may be viewed with skepticism. Most theories – whether scientific or those formulated for simple explanations in our daily lives – are useful in their own way, to explain or predict. Nonetheless, theories and hypotheses (even ones we agree with, that ‘work’) are meant to be questioned as part of the scientific process, and open-mindedness is what enables this questioning.

Conclusion

To close this article, I wish to challenge my readers to approach lived experience and science, and differences of opinion and viewpoint, with open minds. This will allow autistic individuals and researchers alike to work together (much like Baron-Cohen and I are doing), and in the process allow for the betterment of all on the spectrum. This is the only way autistic individuals will truly experience the positive outcomes they desire.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. See, for example, Baron-Cohen (2011) and Mithram (2009); also Baron-Cohen’s founding of the Cambridge Lifespan Asperger Syndrome Service, and his research into earlier detection of autism to enable better support for individuals. Also based on personal correspondence.