Since the 1960s, numerous social psychology studies have shown that people in echo chambers become more extreme in their shared views.  This finding is important enough that it has a name: the group polarization effect.  This can be positive or negative, depending on the group: when people who aren’t racist get together with other non-racists, everybody gets even less racist, but when people who are a bit racist get together with other racists, they become more racist (Myers & Bishop, 1970).  We can see group polarization all over the place, sometimes innocuously: when a plane is delayed, and everyone complains together, they become more extreme in their anti-airline views.  More negatively, when a group of political extremists get together on social media, they radicalize each other.

(As you might imagine, group polarization in general has probably become a much bigger issue since the emergence of social media.)

Unfortunately, the group polarization effect is very much at work in the autism world.  We divide into silos.  I once ran into a graduate student who spent years studying neurodevelopmental “disorders,” including autism.  This individual is neither unintelligent nor reactionary, but nevertheless, before meeting me, she was unaware of the existence of autistic self-advocates or an autistic advocacy movement.  This was earlier this year, so not exactly back in the dark ages.  That a well-meaning scholar in the field was simply unaware of the existence of the autistic advocacy movement speaks to the sheer width of the gap that has developed between autistic people and researchers.

We see similar gaps between other communities.  Surprisingly, given that most autistic adults have parents, there’s not much more overlap between parent communities and the autistic community than there is between autistic adults and researchers.

Researchers make some effort to engage with parents, but far less than they could.

Professionals and researchers are close together in some ways, but far apart in others.

And even within these broad groups – autistic adults, parents, researchers, professionals – we can further subdivide and factionalize ourselves.

Ultimately, part of the problem seems to be that a lot of groups in the autism field sprung up from the grassroots, and their memberships became people from a narrow, circumscribed range of backgrounds.  But a lot of the problem may simply emerge from the heterogeneity of autism.  There are genuine differences between folks on different parts of the spectrum, and people who want more services to meet one need fall into conflict with people who have a different agenda.  The complexity of autism also means that there’s no obvious agreement on what the correct approach should be for one particular case, so again, people operating with different ideologies or opinions fall into disagreement.

But when we factionalize, we limit ourselves, and we exaggerate and enlarge existing fault lines.

I try very hard to be familiar with the perspectives of different communities – and more importantly, to understand these perspectives.  I’m autistic, and I think I have a fairly good handle on what most of the autistic community thinks and wants (whether I agree or not).  Likewise, I’m a researcher, and I think I have a pretty good handle on what most of the research community thinks and wants (again, whether I agree or not).  And I also see subcommunities and distinct opinions within these communities.

I also try to engage with other perspectives.  I try to keep abreast of what parents think and want.  And not just the many parents I can agree with, but also parents I totally disagree with, like people who want to try strange complementary & alternative medical “cures.”  I disagree, but I try to understand their perspectives and motivations.  I don’t just try to know the contents of their beliefs, but the basic assumptions that make up their worldview and that motivate them to have these beliefs.

As a result of my exposure to all these various perspectives, I think I can sometimes see issues in a way that I think gives me greater insight than someone who has only ever seen it through the lens of their own community’s assumptions and beliefs.   Yes, my opinions are subjective, but because I’m aware of various alternative ways of approaching different issues, I’m probably a bit less subjective (or a bit more objective) than someone who is only familiar with one approach to an issue.

More subtly, when communities split up and don’t talk, they develop different understandings about vocabulary and the meanings of terms.  This makes their perspectives “incommensurable”: there is no common standard of measurement, no common frame of reference.  I might say something like, “We shouldn’t ever try to cure autism,” and I might say that with the idea that “autism” is a fundamental core to the personality of the individual.  However, someone else might use the word “autism” to include a bunch of co-occurring things like anxiety or self-injurious behaviours, and they might conclude I’m trying to oppose treatment of these co-occurring things.  I might say “We must apply the neurodiversity paradigm” with the intention that we continue to use psychological interventions as required, but someone else might hear that as a call to oppose all interventions that aim to change people.  When we speak, we talk past each other, because we develop different understandings about language.

That’s why we all need to engage in a serious, genuine conversation with each other.  We don’t have to agree.  I think I probably disagree with everyone in the autism world about something, and often, I regard other people’s views as dangerous and harmful.  But we can still try to take the time to understand.  Unless we truly understand one another, we’ll never be able to talk past the incommensurability.  When two groups mean different things, when they have different frames of reference, we not only need to hear what they say but understand what they mean.  Neurotypical researchers often say that autistic people can lack theory of mind, but it’s equally true that neurotypical people often don’t understand autistic people’s perspectives.  If there’s an empathy problem, it’s (at least) a double empathy problem (Milton, 2012): a problem of understanding on both sides.

There are many genuine disagreements between different communities, and these won’t be addressed tomorrow.  But talking to each other as equals can help us see compelling points that we might have otherwise overlooked in our assumptions.  I even see important areas of common ground that are being overlooked in the misunderstandings, in the incommensurability, as the echo chambers carry on in their separate silos.  I think we need to resist the urge to dismiss our opponents as either having bad intentions or no understanding of the situation, and I think we need to engage with them in meaningful conversation.  We can’t do this if we’re only interested in tokenistic endorsements and getting converts to “our side”: we need to approach one another as equals, and we need to take the time to understand.

References

Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy” problem. Disability and Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

Myers, D. G., & Bishop, G. D. (1970). Discussion effects on racial attitudes. Science, 169(3947): 778-779. Retrieved from https://www.jstor.org/stable/1729790