April has arrived, and with that has come Autism Awareness Month. On the surface, this seems like a great thing. As an autistic person, however, April consists mostly of people showing how ignorant they are about autism. Imagine, after revealing you are autistic, the almost universal response is, “You have autism? Really? I never would have guessed - you don’t look like you do at all!” What is that supposed to mean, exactly? (Hint: it’s not actually a compliment). Overall, April is exhausting, not liberating.
Beyond individual conversations, autism awareness rhetoric is almost always pathologizing and inevitably ends up stigmatizing autistic people, and that’s it. A very typical example of this is referring to the rising rates of autism diagnoses as an “epidemic,” when in fact, these numbers are rising because we now better understand autism. According to the Scientific American, many autistic people before were either undiagnosed or misdiagnosed with another disability, so naturally diagnosis rates will increase. This crisis-mode medical language is not only inaccurate, but makes autism seem like a really scary thing that needs to be cured.
This goes beyond the ableist autism moms like Judith Newman, who, in her best-selling parenting book, said she is “counting the days” until she can sterilize her autistic son. Currently, there is research being done to find the biomarkers, or genes, related to autism, and then to target therapies to those genes. Many autistic people feel this research is eugenicist, and fear it could potentially lead to the end of autistic people being born, as it is already happening to the Down Syndrome community in Iceland. Granted, this research is unlikely to achieve this goal given the complexity of autism, but the fact that this is happening without any significant pushback, and areas of research that would be actually beneficial to autistic people are being neglected, is frightening.
Another place where autism awareness fails autistic people, is in the language and imagery surrounding autism. One example of this is the puzzle piece imagery. This imagery was originally created by a mother of an autistic child trying to describe his “puzzling” condition. It is still used today, and many autistic people feel this imagery portrays autism and autistic people as being confusing and incomplete. To make makes worse, this puzzle piece is often blue, which many interpret as excluding autistic people who aren’t cisgender males. While there isn’t a universal alternative, a commonly used more inclusive image is the rainbow infinity sign.
In terms of language, most prefer identity-first language, over person-first language. As autistic activist Lydia X. Z. Brown eloquently put it while explaining the underlying subtextual differences between the two, “when we say 'person with autism,' we say that it is unfortunate and an accident that a person is Autistic…..When we say 'Autistic person,' we...are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy.” Some autistic people I know, including at Penn, prefer person-first language and argue that they don’t want autism to define them. I understand that, as being autistic is often times difficult and unglamorous, and anyone who prefers to describe themselves using person-first language should have their wishes be respected. However, trying to compartmentalize my neurological hardwiring away from the rest of my identity will not solve the feeling of being constantly misunderstood, having trouble understanding the people around me, and being discriminated against. Rather, autism acceptance will.
One of the clearest examples of why we need autism acceptance is the current outbreaks of diseases like the measles, and rising rates of parents not vaccinating their children. While there are a variety of reasons as for why parents do not choose to vaccinate their children, the fear of autism is an extremely common one. The famous seed that planted this lie was a now infamously denounced study published in 1998 that claimed there was a link between the MMR vaccine and autism. Now, neurotypical children, who had no input on being vaccinated or not, are getting sick. Autistic children are not only at a greater risk of getting these diseases, but also are told that in our society, it’s better to be an unnecessarily dead child than an autistic child. That rhetoric is incredibly toxic and isolating, and makes it almost impossible to not internalize ableism and self-hate.
Even pro-vaccine rhetoric can be stigmatizing against autistic people, as the common statement, “vaccines don’t cause autism” doesn’t clarify that autism isn’t bad. As pointed out by activist Shannon Des Roches Rosa, “when we use our many many mountains of evidence in statements such as, 'There is NO evidence linking vaccines to autism,' without adding the statement 'and fear of autism hurts autistic people,' then we’re actually contributing to negative stereotypes about autism and autistic people, rather than furthering autistic people’s acceptance and inclusion in our society.”
So, what can a Penn student do to be a better ally and promote autism acceptance? In good news, there’s a lot.
First, it’s important to know what life is like while autistic at Penn. There are the obvious struggles with socializing in Penn’s very preprofessional and neurotypical culture, though I would expect the social difficulties no matter where I went to college. However, Penn has made no effort to reach out to autistic students. Penn also hasn’t done anything to connect autistic students, or students with disabilities in general, and help them foster a sense of community. Granted, this is mostly due to HIPAA privacy laws, which means Penn can’t disclose a student’s disability. Of course, I am not suggesting that we violate these laws. However, this does mean that autistic students only meet other autistic students by pure coincidence; I can count the number of openly autistic people that I know at Penn on one hand. There has to be a way for Penn to abide by the law and make sure autistic students know they are supported and not alone, especially since other universities have.
Naturally then, there are no on-campus groups explicitly for autistic students, or even students people with disabilities. This means we are left out of university discourse; no disability constituencies are represented in the United Minorities Council, despite people with disabilities constituting the largest minority in the world. And from an academic perspective, there are very few classes taught about autism, and the classes that are taught are typically high-level biology or nursing courses that don’t really consider autism outside the biomedical context. For me, being autistic at Penn means you receive no recognition by Penn beyond research that has no tangible and benefiting impact on your life.
In terms of being a better ally, it’s probably a good idea to throw all the stereotypes and conceptions of autism that you have into the trash. Autistic people are incredibly diverse, and the overwhelming majority of us aren’t like Dustin Hoffman in Rain Man. Respect our quirks, such as stimming, and be patient if we make a social error. For as long as I can remember, I have had friends who, upon me saying or doing something that upset them, completely cut me off without explanation. It always left me incredibly hurt, and left me spending hours trying to pinpoint what went wrong. If your autistic friend makes a social faux pas or offends you, please directly and respectfully tell us. Although there are abusive autistic people out there, the overwhelming majority of us were never trying to hurt you. If you care and respect us, tell us where we went wrong, and allow us to learn from our mistakes.
On a broader scale, there are many organizations one can volunteer with or donate to, such as the Autism Self-Advocacy Network, which is run by autistic people. ASAN also hosts many events for Autism Acceptance Month, which was created in response to Autism Awareness Month. Currently the most famous autism organization - and hated almost universally by autistic people given their focus on finding a cure for autism - is Autism Speaks, which is also funding the autism biomarker research mentioned before. If you go around telling autistic people about your support for them, we assume you either didn’t research the organization first, or you think autism needs to be cured. Basically, it’s not a good look.
It is not only possible, but also necessary, to create a society where all autistic people are supported and embraced by society, which requires autism acceptance.
KATRINA JANCO is a College senior from Audubon, N.J. studying Communications. She is also a Features Writer for 34th Street Magazine.