Image by Jon Tyson, Unsplash
Like the term “equal participation”, the words “inclusion” and “inclusive” are prevalent today. And they are all typically linked: “equal participation” is often the goal of initiatives focused on “inclusion.” Although the word “inclusive” might appear capacious (inclusive just means everyone, right?), projects focused on “inclusion” and “equal participation” often target specific populations of people who have previously been excluded from something. That’s the case of projects focused on the inclusion of autistic people into higher education, including one in France where I conducted ethnographic research for the dissertation I am currently writing on the changing categorization(s) of autism in France. That project, “Constructing an Aspie-Friendly University” is a French-government-supported initiative aimed at making the national French university system, and later the workforce, inclusive of some autistic people. The project is made up of twenty-five universities throughout France and has partnerships with a number of private companies, often in the technology sector. To achieve its inclusion aims, Aspie-Friendly places a heavy emphasis on educating the university community about autism, especially through creating media about their project, such as a series of professionally produced pedagogical short films about autism, and in creating and utilizing technological interventions to facilitate equal access for autistic students. Observing the production of the aforementioned film series and participating in the preparation and execution of a hackathon, where various technological prototypes aimed at the promotion of autistic inclusion at the university (what Liz Jackson might call “disability dongles”), were major parts of my fieldwork.
There are good reasons for creating an inclusion project focused on one specifically excluded population: autistic university students. Enrollment rates of autistic students in universities are appallingly low, and for those autistic students who do enter universities, rates of retention are abysmal[1]. And typical cookie-cutter accommodations in higher education, like increased exam time, while reductive and insufficient for many disabled people, are frequently particularly inadequate for autistic students who often face communication challenges, social misunderstandings, and prejudice on the part of many. Furthermore, there are especially compelling reasons for creating a project focused on autism in France: a long-dominant psychoanalytic orientation in French psychiatry that claimed that autism is a rare and treatable mental illness caused by cold and unloving mothers resulting in autism being particularly stigmatized in the country. Likewise, the exclusion of autistic children from public schools, insufficient services for families of autistic children, and a lack of assistance for autistic adults, especially those with high support needs, have led to the country being condemned numerous times over the years by international governing bodies like the United Nations, including as recently as 2021. But defining one specific category for a targeted inclusion intervention can be complicated by a key on-the-ground reality: people and their situations are complex. In other words, people rarely fit into predefined boxes. My participant observation, and especially the conversations and interviews I had with my interlocutors revealed time and again that people often fit into multiple (often marginalized) categories. It also revealed concerns from some students that even in defining a specific targeted population within the autism category, qualifications (and thus exclusions) are made.
Autism and Intersecting Identities
I begin with insights from Alix[2], a student who I came to know during my research, and someone who identifies with multiple intersecting identities. As a member of an autistic student group independent from, but connected to Aspie-Friendly, they are very interested in efforts to make the university accessible for autistic students. Most of the accommodations Alix has through the Disability Center at their particular university have been granted because of Alix’s chronic illness which affects their mobility. Alix normally uses a cane, but sometimes uses crutches depending on their changing needs. Although Alix discloses the fact that they are autistic to their instructors, often Alix’s physical disability is the only thing the professors recognize and take into account.
I tried one time but you have to realize that when one is autistic, communication and asking for things is not easy…
Alix went on to explain to me how they had been completely confused by their schedule at the beginning of the semester and had emailed someone who never responded, and so they found their own solution. Rather than deal with complicated bureaucratic structures, Alix prefers to manage things on their own or to seek advice and support from specific individuals (the student-tutor the Disability Center has provided has been an important lifeline), and from other autistic students via a Discord server. Receiving and giving support to fellow autistic students has been particularly important to Alix. Although fatigue and numerous medical appointments can make it difficult to participate in all of the group’s events, being a part of the autistic student association:
allows me to participate in university life and to feel like I’m having a little bit more of a normal university life. Because helping each other is part of that and it gives me the feeling that I’m doing something, being part of something.
Accessing the university is difficult for Alix and it is not always clear from where these barriers arise. In the elevator badge example, is the problem that the university is not de facto accessible to students with physical disabilities? Or is it that the university is not accessible for autistic students, for whom communication challenges might make navigating unwieldy university bureaucracy particularly difficult? In Alix’s estimation, it’s interconnected, but they have not been able to express that to anyone in a position of authority at the university. Although Aspie-Friendly is committed to involving autistic students in their initiatives (for example, autistic students participated and assisted in organizing the hackathon, and autistic students played fictionalized portrayals of autistic university students in an educational web series created by the project), students are typically invited to participate in projects designed in response to predetermined projects constructed to solve “problems” around inclusion. These problem-driven projects are generally determined by experts based on certain scientific ideas about the needs of autistic students.
Inviting user participation in response to projects focused on predetermined problems, especially in the hope of finding technological interventions, is in line with a kind of user-centered “participatory design” or “design thinking” approach (Costanza-Chock 2020). “Design thinking” is at the heart of many initiatives focused on autistic inclusion in higher education, especially in Europe, including the “Autism&Uni” Project (Fabri et al. 2016) — a project supported by the European Union from 2013 to 2016 and now hosted by Leeds Beckett University in the United Kingdom. Aspie-Friendly is officially affiliated with the Autism&Uni project through an offshoot project, the Image Project, an Erasmus+ funded project focused on the transition of autistic university students into employment. Despite the involvement of autistic students in Aspie-Friendly events (which stands in contrast with the lack of autistic involvement in some autism higher education programs in the U.S.—many of which also charge exorbitant tuition fees, unlike the services of Aspie-Friendly which (like university itself) are free for French students), there is little space for a student like Alix to share insights that might fall outside of pre-determined ideas about the lives and experiences of autistic students with those designing the project and its initiatives.
Alix’s experiences are not only influenced by their intersecting disabilities; they are also transgender and non-binary and regularly encounter transphobia. In their opinion, their trans identity is also interconnected with autism since rigid gender boundaries are confusing to them. In Alix’s estimation, the fact that it is difficult in France to talk openly about these intersecting differences only adds to their challenges:
And in France, it’s very taboo to name things. It’s very taboo to talk about things. To talk about racism in France [for example], oh la la, it’s a subject…that’s a very taboo subject. Disability, it’s the same, it’s hyper taboo. These subjects are forbidden a little. In fact, in France, it’s not at all OK to talk about all that… There are also things that are forbidden, for example, to do statistical studies on certain oppressions, that’s not allowed in France. They say that it’s… because in France…we are all equal …… but it’s not true. It is not true for me. As a disabled person, I don’t feel like a citizen. I feel like I’m cast aside.
Inclusion for “Aspies”
As Alix’s situation illuminates, there may be limits to inclusion projects that do not begin with the experiences of real people whose lived intersecting realities may diverge from the expected problems of a universalizing category like “autistic university student.” Interviews and conversations with my interlocutors over the course of my research also revealed concerns some had about targeting one specific sub-population of autistic students for inclusion, those whom the project calls “aspies”, to specifically indicate autistic students “sans déficience intellectuelle” (without intellectual deficits). The term “aspie” comes from Asperger’s Syndrome, a type of autism that in the current edition of the DSM-5 has been subsumed under the umbrella category “autism spectrum disorder”. Although many follow the DSM in dropping the category, terms like “autiste, Asperger” and “aspie” remain widely used in France. Some students with whom I spoke dislike the term “aspie” because of its association with Hans Asperger (from whom Asperger’s Syndrome comes), a Nazi collaborator. But I found that critiques of the term were often nuanced and complex. Every student I spoke to made clear that they had no problem with people who preferred to personally identify as “autiste-Asperger,” especially if that was the specific diagnosis that someone chose as their personal identity. For those who raised concerns, these worries were not so much about terminology, but rather about the idea of defining a sub-category of autism for specific intervention. In two different interviews and many more conversations, people brought up a fear that some might not understand that “aspies” can experience significant challenges—in short, that their autism can be extremely disabling, despite the more “elite”[3] label of “aspie.” This echoes something said during the first-ever autistic-organized and autistic-led training session at an Aspie-Friendly university (which I observed as part of my fieldwork). One of the two autistic presenters spoke about the “double bind” that autistic university students such as herself often find themselves in:
One thing that is quite complicated with this kind of training is that if we discuss strengths associated with autism, people think that we don’t need help and therefore, they won’t help us. [On the other hand,] to get accommodations, we are obliged to present a version of autism that is extremely devaluing and very focused on deficits and which, as a result, is not the reality. And in fact, each time we are a little blocked in a double bind… I also think that one thing that blocks this kind of initiative is the fact that the discourse on autism is monopolized either by associations, or by parents of autistic people, etc., but rarely those so-concerned.
Some with whom I spoke pointed out that many people associate the term “aspie” with autistic people who do not have difficulties with spoken language, yet there are autistic students involved with Aspie-Friendly who had language delays as children and who continue to have difficulties with spoken communication, and some were never diagnosed with Asperger’s nor ever identified with that term. As one student whose critique was rooted more in logic than activist outrage explained to me, autistic people (like all people) develop over the course of their lives, but it wouldn’t make sense to say that someone was autistic before, but now that they have made progress, they have Asperger’s. He was asking, how can someone previously diagnosed autistic become an “aspie” once at the university? Respondents also worried that the term “aspie” was creating a hierarchy in the autism community between, as one student said, those perceived as “bad autistics” and “good autistics.” This was especially concerning to one student who wanted to make sure the university would be accessible for all autistic people, whether they would be going on to employment after their education or not:
There is a whole variability among autistic people. There are people who have more or less difficulties, others who are more or less independent, and all that. Except that even the people for example who are non-verbal it does not prevent them from having interests which are taught in the university, and from wanting to further their education about that subject without even necessarily thinking about a job after. I think that now in universities we’re always thinking about the job after. You study this thing, for this job, you know?
As the examples I have given in this short post show and as I learned time and again during my research, in practice, people’s individual situations do not always easily align with narrowly defined categories. Does that mean that projects designed for a previously excluded population are misplaced or should not exist? Absolutely not. This is not an argument against targeted inclusion projects. In fact, my research continually revealed how much students benefited from increased understandings of autism, increased acceptance of autistic difference, and especially, the spaces opened up by Aspie-Friendly that allow students to gather for mutual support. It is, however an argument for listening to the people for whom projects are designed, and intentionally making time and space to think about individual situations, intersecting forms of oppression, criticisms, conflicting ideas, and paradoxical situations. In short, all the messy things that elide narrowly defined categorizations.
Equal Participation and Autistic Inclusion
This series of posts is inspired by Christopher Kelty’s “historical ethnography of the problem of participation” (Kelty 2019, 5)…” Pointing out that “inclusion” literally means “confinement,” Kelty identifies “inclusion” as “one of the most fraught cognates of participation” (Kelty 2019, 33). (For an interesting take on the word inclusion as it relates to disability in France see Halpern 2021) “Inclusion,” like “participation:” is generally accepted as a self-evident good for which society and its various institutions should all be striving. And like “participation,” the often taken for granted discourse around inclusion has a specific history—one that, as it turns out, comes from France. Educational philosophers Michael Peters and Tina Besley (2014), building on the work of sociologist Dan Allman (2013), trace contemporary inclusion discourse to the 1974 publication of Les Exclus: Un Francais Sur Dix (The Excluded: One in Ten in France) by French politician René Lenoir. The argument of this influential book was that as much as ten percent of French society (the disabled, the elderly, and various social outcasts “inadaptés sociaux”), had been excluded from the economic prosperity of the three decades following the Second World War. This was seen as a grave “threat to France’s Republican model of integration” (Peters and Besley 2014, 105) and its promise of social solidarity rooted in the idea that all citizens are equal. A focus on identifying those “excluded” and finding ways to “include” them then spread into the Anglophone world through the introduction of neoliberal, so-called “Third Way” policies in the UK focused on providing “equality of opportunity” to society and its existing institutions (rather than, say, revolutionizing them) (Peters and Besley 2014, 107).
When a previously excluded group (like those identified as “aspies”) becomes “included” in something (like the French public university system) that something comes to be called “inclusive.” But inclusion, as Foucault and many others have pointed out always rests on a binary of inclusion/exclusion (Peters and Besley 2014). So while we might encounter the word “inclusion” and think “everyone,” that is never the case. In a sense then, “exclusion” is baked into every project of “inclusion” from the start. In fact, we only know who is “included” through defining who is “excluded”. But who does the work of determining the boundaries of inclusion? Are intersecting categorizations and the lived experiences they engender considered? And what are the criteria for determining the included population? It turns out that those called “aspies” in the French university system (whether they self-identify with this term or prefer another such as “autiste”) have much to say about these topics.
Notes
[1] Although the numbers are increasing significantly each year, in 2022 there are 500 students supported by the Aspie-Friendly project out of an estimated 700,000 autistic people in France (Graveleau 2022). I was not able to find data on the rates of university retention for French autistic students, but data from the U.S. suggests that only 39% of autistic college students in the U.S. complete their degrees Shattuck et al., 2012; Wei et al., 2013).
[2] This is a pseudonym. Quotations attributed here to Alix and other students were translated from French into English by the author.
[3] The specific term “elite” came up in two different interviews I conducted in which critiques were made about the term “aspie.” For example, in response to my question about the term aspie, one respondent said in an ironic and critical manner: “We [aspies] are remarkable because we have this particularity, we are part of a small elite.”
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