Structural ableism present in autism support organizations

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 (or, in case of autism, deviation from neurotypical norm). However, not many people working with autists are aware of the fact that ableist attitudes against autists are almost guaranteed to exist in your organization as well. That is, because ableism does not only consist of obvious and deliberate acts of discrimination. Often, greatest obstacles for participation stem from ableist prejudices and assumptions concerning autism and capabilities of autistic people that people hold without even being aware of the fact.

Sure, just about everyone is now about to protest: ”But in our organization we are doing our best to listen our autistic customers! We encourage autistic people to participate in our processes!” Well, that is great, but unfortunately it is not very good proof for being ableism free. For instance, when one proclaims that they are ”listening to their customers”, they are also expressing existence of a position of power. The one who ”listens” is also the one who asks -and as such, the one who gets to decide, which questions are worth attention and questions. 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. These beliefs can easily be ableist. 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 matter, 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? Politics is not easily accessible, but even in current situation, politically active autists do exist. I am sure that were there fewer obstacles, we would be even more numerous.

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 could also tell, that ”listening” does not necessarily mean genuine understanding. According to research, autistic and neurotypical people have difficulties in understanding one another well, because our natural powers of perception and processes of sensemaking work differently. 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 we 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 functioning 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 ableism, autistic people should also be part of your organization in normal, wage-earning positions, including tasks involving policy drafting and decision making. Have you hired openly autistic professionals? I hope you have, because thinking that there aren’t any qualified autists or that autistic people are not suitable for expert level or leadership positions, would be purebred ableism. 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. When 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). For the same reason, appeal to privacy of health records when being asked about autistic employees is not a very convincing argument, because an autist looking for a position where they may be able to support fellow autists has the world’s best reason to be open about their autism: it should be an obvious strength for an applicant. Therefore, unwillingness to make even modest adjustments that would enable autists to work in influenial positions of your organization is ableism. Especially, when it’s no big deal for many neurotypical workplaces to employ people titled assistants, and working from home is a perfectly normal way to work today.

Third form of everyday ableism is problematic presentation 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 deeply autistic people craft cute but useless things in therapeutic settings. If autists are asked to speak in public, people often want to hear about their subjective experience and everyday life (that can also conveniently be dismissed as anecdotal when necessary). 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 ableism, 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.

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? Because, there are autistic people working in such places, and 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 within structured optimized for the goal of making society more accessible and facilitating participation of autistic people in it.

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