This Autistic Professor Chooses Hope

Dear Higher Education,

I’ve fought like hell to be here.

To stay here

To be seen as worthy of being here

To get past the gauntlet of gatekeepers

            And prop the gates open behind me

                        With a cane

                        Crutches

                        Rollator

                                    My own body.

Now that I’m here, albeit with the ominous parenthetical (for now), earning tenure isn’t my biggest anxiety. While it’s far from assured, failing to receive tenure isn’t the scariest thing.

Dear Higher Ed, I’m autistic.

I’m a disabled, neurodivergent, autistic assistant professor of musicology and director of disability studies at Virginia Tech. I’ve been tremendously fortunate to build relationships with people who understand what I have to offer my alma mater, who support my work, and who have made this innovative position a reality.[1]

However, I’m also confronted daily with the reality of what it means for me—a disabled autistic woman—to be in this role. To be frank, many researchers of autism would rather not be confronted by the realities of autistic adults. They don’t want to hear how we have been traumatized by Applied Behavioral Analysis, nor do they want to discuss how we autistics successfully form community and connection with each other without nonautistic intervention.[2] Unfortunately, Virginia Tech is not spared these conflicts. I don’t have the energy or inclination to seek out fights, but they’ve come to my door (and my inbox) with frustrating regularity:

Students crying in disability studies courses when they listen to autistic people describe the experience of prone restraint (including how it kills kids) because they are being taught to perform prone restraint on autistic children.

A senior faculty member wants me to endorse their opinion that an autistic prospective student / current student should be pushed away from a career path based on assumptions about what autistic people can / can’t do, and what “type of person” a career requires.

Recurring emails: No, I’m not interested in adding your class that frames disabled people as broken burdens (or objects of curiosity and pity) to the disability studies minor. Yes, we need to revise this class that is already on the minor to center disabled people. Curriculum committee, I understand your concern about this new proposed course and the shallow bench of faculty capable of teaching it, but that’s why we need more out and proud and politically disabled  faculty members. No, if you are promoting Applied Behavioral Analysis and other autistic conversion therapies, you should not be using the “neurodiversity” label; what you are saying runs counter to the neurodiversity paradigm. Yes, I would appreciate if you hired a disabled speaker for Disability Employment Awareness Month. No, I don’t think it’s okay to exclude the disability community from the hiring committees for disability service professionals. No, I have never worked with the autism center; no, they have never asked me to speak at their conference; no, I don’t expect that they will.

A colleague wants advice on accommodating a student. Hours into the conversations and emails, I realize they just want my blessing to not accommodate a student.

The meeting is mandatory, in-person, unmasked, in an inaccessible building, with no clear path for me to get there, after usual work hours. And if I can’t go, it’s a strike against my “collegiality” and “professionalism.” (For some reason, failing to provide basic access does not have such consequences.)

After experiencing an injury more than thirty minutes into discovering closed and inaccessible paths, I start crying out of frustration. Is it more professional to arrive late, crying, and injured? Or is it more professional to just not arrive at all?

I send emails on my cell phone letting organizers and supervisors know the situation and that I will not attend. They are flabbergasted. Here are maps! (that don’t show accessible paths) Why didn’t you tell us sooner? Why didn’t you make another plan? Can you write up your experience in emails and send it to these people + offices? (Can you then argue with them about your experience until it gets perilously close to gaslighting?)

What do you expect? You can’t be accommodated if you don’t advocate for yourself!

Also, yes autism is often characterized as a social-communication disorder, but you should have known we didn’t literally mean (the rules that we wrote). You should have known (the rules that weren’t written). And you need to communicate more.[3]

I don’t get to experience a day where I am not reminded what it means to be autistic, to be disabled. Being autistic and being disabled means having a disproportionate amount of logistical and social-communication labor added to your daily life, labor which will never count towards tenure. But like I said: tenure is the least of my worries. Being autistic and being disabled means being aware every day that society at large, institutions, and sometimes specific individuals would rather you just not exist.

So, pardon me, Dear Higher Ed, if I was significantly less surprised by the results of the November 2024 election and the events of the last few months than many of my peers. Distress and alienation are close friends, and safety is a foreign concept to me.

I am fortunate to have so many people who believe in me, take a chance on me, invest resources in me. Yes, I’m worth it, and millions of my autistic and disabled siblings deserve this just as much as I do, but don’t receive it. Yet more and more since November, even the people closest to me—the ones who show up for me in a crisis without waiting for me to work up the courage to ask, the precious friends who interrupt the cycle of breathing in ableism and exhaling self-ridicule, this beautiful chosen family that is both the reason for and the means by which I keep going—even they don’t entirely get what life is like for me right now.

According to the new occupant of the White House, I am “a dire threat to the American people and our way of life.”[4] Why? If you follow the order, it seems to be because disabled people like me can’t qualify for military service, and healthcare costs money. Rather than asking why, unlike citizens of peer nations, “Americans of all ages are becoming sicker, beset by illnesses that our medical system is not addressing effectively,” Trump’s executive order blames us disabled folks for harming “our economy, and our security.” His “solution” is to target individuals, blame them for the state of their health, and offer pseudoscientific critiques of environmental, medication, and food safety—while systematically defunding the federal agencies tasked with protecting Americans. And of course, there is no mention of poverty, racism, housing segregation, food instability, deregulation of industrial pollution, or predatory insurance practices that escalate costs and worsen care outcomes.

Who will chair this “Make America Healthy Again” commission? The Secretary of Health and Human Services, Robert F. Kennedy Jr.: politician, environmental lawyer, and anti-vaccine activist/conspiracy theorist. One of his primary reasons for undermining public trust regarding vaccines (even amidst deadly outbreaks of measles in the United States) is the repeatedly discredited myth that vaccines cause autism. Andrew Wakefield started this lethal lie to profit financially from legal consulting fees, and he planned ventures such as diagnostic test kits for his novel condition “autistic enterocolitis” and for an updated version of the MMR vaccine; you can follow the money of anti-vaxxers to find similar motivations for their misinformation.[5] Wakefield was struck off the UK Medical Register in 2010 (meaning he is unable to practice medicine), yet here we are, dear Higher Ed: our Secretary of Health and Human Services, who is going to “Make America Healthy Again,” convinces parents around the world to forego lifesaving vaccines so their kids don’t end up like me. I think it’s fair to summarize his position as “better dead than autistic.” And it’s not just his position. When President Trump addressed Congress on March 4, he, too came after us autistics: “Not long ago … 1 in 10,000 children had autism. Now it’s 1 in 36. There’s something wrong.”[6] I can’t find any credible source for his “1 in 10,000” figure, and treating 1 in 36 as an escalating crisis rather than improved diagnosis of autism (and decreased misdiagnosis of other conditions) amounts to fearmongering that only hurts autistic people.

This is often the moment when people are tempted to clarify that this anti-autistic hate—so virulent that it has caused children to die from preventable diseases—is not about people like me. It’s about “those” autistics: severe, Level 3, profound, nonspeaking, intellectually disabled, “mentally retarded,” self-harming, violent, dependent, immature, with the “mental age” of a child, tragedies….

Dear Higher Ed, with all due respect, that is bullshit. Autistic people aren’t tragedies. We are, however, systematically dehumanized, abused, and murdered.[7] Functioning labels, in any form, are inaccurate at best and deadly at worst. The autism spectrum is multidimensional, complex, and temporally specific: who I am now is not who I was, nor is it who I will become.[8] So yes, I am more like your autistic kid than I am like you, and your autistic kid will grow in their own time and pace, especially if you presume competence and help them access communication that works for them.[9] Autistic people are human beings, not burdens. We are creative, funny, empathetic, determined, innovative, and beautiful. The best future for all of us is one that fully includes and empowers autistic people, but we can’t get there if we defund Medicaid or institutionalize disabled people. When you deny our civil rights and dignity, you forfeit a piece of your humanity.

 My social media is filled with disabled brilliance and humor, including the wry observation that this Republican administration has accomplished something previous Democratic administrations never could: disability is finally part of diversity. The DEI attacks, such as “Ending Radical And Wasteful Government DEI Programs And Preferencing,” were in fact attacks on disability too, as spelled out in Section 2a:

The Director of the Office of Management and Budget (OMB), assisted by the Attorney General and the Director of the Office of Personnel Management (OPM), shall coordinate the termination of all discriminatory programs, including illegal DEI and “diversity, equity, inclusion, and accessibility” (DEIA) mandates, policies, programs, preferences, and activities in the Federal Government, under whatever name they appear.[10]

 I’ve seen many examples of parents of disabled kids expressing buyer’s remorse and regret after voting for Trump. They are shocked that his party is voting to defund Medicaid (yes, you cannot cut $880 billion of spending under the energy and commerce committee without impacting Medicaid), challenging Section 504 of the Rehabilitation Act of 1973 in court, threatening the Department of Education—and thus the funding and enforcement of the Individuals with Disabilities Education Act, 504s, and IEPs—and attacking the use of prescriptions to support their children’s health and wellbeing.[11] I grieve for these parents and invite them to join us as we resist these efforts to harm the disability community.

But can I let you in on a secret, Dear Higher Ed? We disabled folks weren’t surprised. Everything happening is consistent with Trump’s record.[12] More than that, all systems of oppression are interlocking and interdependent, so where any form of discrimination exists, ableism will follow. Ultimately, I cannot advocate for autistic people without also resisting racism, transphobia, sexism, and any other form of oppression. I am a White autistic woman, but I cannot ignore that Black autistic men are among the most at risk from police brutality.[13] I’m a cishet autistic woman, but I identify with the concept of “autigender,” which speaks to the ways in which my autistic brain impacts my experience of gender, even as I do not experience the discrimination that my queer and genderqueer siblings encounter every day. When autistic people are significantly more likely to defy gender binaries, you can’t be pro-neurodiversity and anti-trans. It is disturbing that more time, energy, money, and attention is spent debating trans athletes than the more numerous (and potentially deadly) cases of measles in the United States. An executive order declaring only two recognized sexes has no basis in biological reality, given the incontrovertible existence of intersex people, but the myth of the gender binary is perpetuated.[14] Without these spurious claims that God or “nature” dictates separate social roles for men and women, it becomes impossible to police gender identity, gender expression, or heteronormativity. This obsession with bodies as superior or inferior underlies racism, imperialism, and ableism. Is it any wonder that the Nazis burned books about trans health, or that they tested the technologies of the Holocaust first on disabled children?[15] Should it surprise us that queer people were murdered alongside Jewish, Romani, and other “non-Aryan” peoples? These connections are clear in Talila A. Lewis’s working definition of ableism (updated January 2022):

A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism.

This systemic oppression that leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness,” and/or their ability to satisfactorily re/produce, “excel” and “behave.”

You do not have to be disabled to experience ableism.[16]

These shared experiences of oppression rooted in the devaluing of bodies and minds become a call to action, mutual aid, and resistance.

Remember when I said that it sometimes feels like my chosen family doesn’t understand my life right now? I’m sure that seemed incredibly dark, but it’s actually a brilliant light that cuts through all darkness. Disability Justice teaches us that cross-movement organizing is essential, and that those most impacted by a situation ought to lead the development of solutions.[17] My nonautistic, nondisabled people don’t need to get it to be there, work alongside me, believe me, move with me, or trust me to move with them in return. I only know what it’s like to be me (and I barely know that, to be honest). I learn what it’s like to be them when I’ve earned their trust enough for them to entrust me with that sacred knowledge. And then we move together.

But if I can let you in on one last secret, Dear Higher Ed: there is no such thing as “nondisabled,” just “not yet disabled.” Disability is the most universal human experience. My autistic brain certainly puts me in the minority, but the neurodiversity paradigm teaches us that diversity of human cognition is not just a biological reality, but a source of strength if communities fully support all their members. We do not need to be afraid: we have everything we need to resist oppression and hate. None of us are free until all of us are free, so we work together to liberate each other.[18]

Dear Higher Ed, we’ve already made missteps. We’ve sacrificed the right to peacefully protest on our campuses and punished the student leaders creating the future of civil rights and liberation. We must hold the line before it is too late to reassert our First Amendment rights. Dear colleagues, please take a breath and take inventory of your privileges, power, advantages, resources, strengths, and networks. The atmosphere of Higher Education can atomize us, and we have to actively resist fear of authority and the competitive behaviors too often rewarded by academia. We must exercise our First Amendment rights to protect them, and we need to hold each other accountable in this work. Any shred of shared governance that still persists is power that cannot be ceded. Don’t wait to lose your grant, your postdoc, your job. Stand with your colleagues who are already being attacked: co-author with them, share resources, speak of their brilliance to anyone who will listen, and support them with meals, transportation, kind words, check-ins, and fulfilling whatever needs they share with you. We are witnessing the death of children from preventable diseases; the torture and murder of trans people; the destruction of the already weak social safety net; the corruption of our air, water, forests, safety regulations, and civil service; the abandonment of trusted allies and embrace of tyrants; and a crisis of our democracy. Failing to receive tenure isn’t the scariest thing.

The way forward is not easy, but it is simple. If we want to do better, we must do the emotional labor required to accept that we have harmed each other. We have participated in and perpetuated ableism, racism, sexism, transphobia, homophobia, and other forms of oppression. We are going to let go of our ego, listen to each other, believe each other, protect each other, and build the world we want to see. We will extend grace and forgiveness to grow and learn, and we will reject complacency and hubris. We will stop complying with unjust directives in advance, and instead draw on the rich legacies of resistance passed down from our ancestors and elders to survive, thrive, create, help each other, uphold our shared humanity, and find joy everywhere we can.

Dear colleagues, I am honored to be in this struggle with you.

In Hope,

Elizabeth McLain, PhD

Notes