Structural ableism and nentism present in autism support organizations
Update/2022: We now have a new word, created by me my collaboration for ASY’s (Suomen Autismikirjon Yhdistys ry.) project for equal glossary for autism. In the project a Finnish glossary was created to replace outdated and unequal autism terminology. The glossary also included some new terminology to describe autistic experience.
By definition, nentism is prejudice, antagonism and discrimination against neurodivergent traits. Much of discrimination against eg. autistic people targets traits that have nothing to do with dis/ability or functioning but are simple differences that are neutral in that respect. Examples: lack of eye contact, quiet body language, atypical/autism typical life choices etc.
Nentism also includes belief in superiority of the most common neurotype. Examples: disapproving neurodivergent way to do things even if results are same or better than when same tasks are done neurotypical way, or (false) belief that instead of accommodations, support and equality neurodivergent people want to be ”cured” and become neurotypical, and that neurodivergent lives are meaningless and not worth living.
Original article has been edited to use current, equal terminology.
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Like everyone working with autists certainly already knows, ableism is a form of discrimination in which people are discriminated against and regarded as inferior based on disability. Autistic people also face nentism, discrimination and prejudice based on neurodivergent traits. However, not many people working with autists are aware of the fact that ableist attitudes against autists are almost guaranteed to exist in organizations whose mission is to support autistic people.
This happens, because discrimination is much more than explicit hatred obvious and deliberate acts of discrimination. Often, greatest obstacles for participation stem from prejudices and assumptions concerning autism and capabilities of autistic people that people hold without even being aware of the fact. For example, people may not even think to offer autists certain opportunities or forms of support (eg. career support for highly educated autists) because they believe that autistic people are not interested of such careers or that autists cannot have successful expert of leadership careers due to autism traits, while in truth lack of support and reasonable accommodation due to prejudice are critical factors.
At this point, just about everyone is now about to protest: ”But in our organization we are doing our best to listen our autistic clients! We encourage autistic people to participate in our processes!” Well, that is great, but unfortunately it is not very good proof for being free from nentism and ableism. For instance, when one proclaims that they are ”listening to their customers”, they are also expressing existence of a power structure. The one who ”listens” is also the one who gets to ask the questions -and as such, the one who gets to decide, which questions are worth attention and questions and what answers fall within range of acceptability.
What is deemed worth asking, is in turn, strongly influenced by prejudices and assumptions concerning what the one who asks believes to be important in people’s lives. Such beliefs can easily be ableist or nentist. How much, for example, has your organization thought about obstacles autists encounter when attempting to participate in politics or other forms of activism? In case you have not thought about this issue, could that be explained just a little by existence of an assumption that autistic people are politically passive? What if I tell you, that this text is written by an autist who has participated in politics locally in many different ways, including serving as a vice chairperson of a political party’s local chapter and as a representative of my area in larger meetings of that party? And do not think for a moment that I am a lone exception. There are others. I know because I have met them and talked with them. Politics is not easily accessible for autists, but even in current situation, politically active autists manage to exist. I have no doubt whatsoever, that were there fewer obstacles, we would be even more numerous and access more prominent positions.
The one who ”listens” also holds the power to decide, how much the opinions and feedback they have received actually affect their future actions. Many autists can also tell, that ”listening” does not necessarily mean genuine understanding of message in the way it is meant to be understood. According to research (Milton 2012) autistic and neurotypical people have difficulties in understanding one another well, because our natural powers of perception and processes of sensemaking work differently. There is a clear tendency to interpret words and actions of people whose neurotype is different excessively negatively. Therefore, what a neurotypical person hears, may not be at all what the autist they were discussing with was actually trying to tell them.
”Enabling autistic people’s participation” is a phrase containing all the usual issues that autists face in working life in general. The one who ”enables participation” also exercises power by deciding the time, place, manner and extent of allowed participation. In practice, this usually translates into welcoming autists to participate as members of a task group or a panel, or inviting autists (usually for free or for minimal compensation) to tell about their subjective experiences. Sometimes a lucky autist may even be given a trainee-level position in an autism support organization.
However, if you do not suffer from nentism and ableism, autistic people should also be part of your organization in normal, wage-earning positions, including tasks involving policy drafting and decision making and financial responsibility. Has your organizations hired openly autistic professionals? I hope you have, because thinking that there aren’t any openly autistic professionals autists or that autistic people are not suitable for expert level or leadership positions, would be purebred nentism.
Hiding behind ”confidentiality and privacy of health information” does not work that well out either, because disclosing autism should be a relevant strength when applying for such a position. Assuming casually, that people applying to open positions in your organization would not be comfortable to express an advantage relevant for working in your organization means, that your organization’s issues with nentism and ableism do not only exist but run deep. Autism is not an illness. It is an identity that comes with special insight that should be a clear advantage when interviewed for positions in an organization serving autistic people.
It is certainly possible that an autistic person’s job description and working conditions can not be exactly similar to those of their neurotypical colleagues, but this is purely a matter of organizing, discussing and job design. An employer should be open and willing to allow for reasonable accommodations and adjustments and not see *any and all* such needs as prohibitive for employability. Especially we are discussing organizations that have an explicit goal to support autistic people, ”extra trouble” stemming from the fact that autists are different from neurotypical people should be more than well compensated by insider knowledge and understanding of autism (which comes in addition to all the formal qualifications for the position in question).
Third form of everyday ableism is problematic representation of autistic people in an organizations’ communication and advertising materials. Today, it is still quite normal to encounter questionable, outdated concepts and stereotypical visual materials where Asperger-assumed females bounce around green fields and people labelled as ”deeply autistic” (meaning usually a person who is both autistic and developmentally disabled, which are two different things) people craft cute but useless things under guidance.
When it comes to talking about so-called substance matters, it is almost self-evident, that best experts are neurotypical people. Once again, the reason for this can not be that there are no autists capable and qualified to discuss autism in academically learned manner (because there are plenty of such people). Instead, the reason could easily be discrimination, for example failure to question the prejudice according to which any autists’ expertise on autism is necessarily limited to subjective, emotionally colored descriptions of their individual lives with limited relevance and applicability to larger discussions on autism and autists’ place in the society. Such view undermines and overlooks academic qualifications, work experience and presumes that objectivity comes with membership in majority, not by personal qualifications. Which would be…blatant discrimination.
Where are photos of autists solving complex equations, giving presentations, working in laboratory or negotiation in a boardroom among other suit-wearing people? Seriously: where are they? And where are autistic autism experts?
There are autistic people working in such places and autistic autism experts such as myself obviously exist. Once we manage to put some limits to the rampant ableism and give talented autists the support they require in order to flourish, there will be plenty more of such autists. Not that organizations supporting autistic people would run out of work even in such utopistic reality. For as long as society is mostly made by neurotypical people for neurotypical people, being different will always mean having support needs and a need for special understanding. What would change is, that instead of settings that harbor problematic power structures such as casting people in roles of the helper/one who needs help, our neurotypical friends and allies would function in truly supportive roles within inclusive social structures.
Reference: Milton, Damian 2012: “On the ontological status of autism: the ‘double empathy problem’.” Disability & Society 27: 883 – 887. DOI:10.1080/09687599.2012.710008
Kaiao is happy to support your organization also when it comes to countering structural ableism. Our services combine consulting expertice, understanding of social phenomena and structure and expertice by experience. You cant start your countermeasures to ableism easily by contacting saara.reiman@kaiao.fi