April is Autism Month. Through this episode, multimedia reporter Amelia Jarecke seeks to take listeners beyond autism awareness to autism inclusion and empowerment by:
- featuring autistic students who explain what having autism feels like
- explaining the history of autism misinformation and the current misconceptions about the syndrome and
- discussing ways in which non-autistic people can think, speak, and act in a way that empowers people on the spectrum.
This episode features Kathy Dow-Burger, a University of Maryland Department of Hearing and Speech Science clinical associate professor, the Founder and Coordinator of the Social Interaction Group Network for All (SIGNA), and Co-Director of the University of Maryland Autism Research Consortium; Nina Agrawal, a junior computer engineering major and president of the Autism Student Group; and Emmet Ryan, a junior information science major and treasurer of the Autism Student Group.
Social Interaction Group Network for ALL or UMD SIGNA
The Autism Student Group
“Anti-Vaccine Movement” from You’re Wrong About
“Why Autism Functioning Labels Are Harmful — and What to Say Instead.” by Jessica Flynn
“Motions” by Marco Sesay
CNN Reporter: Let me bring in now Emmet Ryan, he’s a student at the University of Maryland. Go ahead Emmet.
Emmet Ryan: “Mr. Yang, like your son I am on the Autism Spectrum, and while I cannot speak for other Americans on the same spectrum, I can say with confidence that I would likely not be speaking here today without support, the same support that the Trump administration has threatened to cut funding for. Would you be able to elaborate on your plan to protect these programs along with programs not currently receiving any federal funding?”
ER: “if I’m able to say, “I’m autistic” on live TV like. that’s it, I’m actually pretty comfortable with saying it anywhere.”
Amelia Jarecke: You’re listening to a special bonus episode of Offbeat, a podcast from The Diamondback. I’m Amelia Jarecke.
Back in February I was listening to a podcast called You’re Wrong About. Eric Michael Garcia, a reporter with autism, talked about the roots of the myth that vaccines cause autism. Listening to him, I realized that I didn’t know how to define autism. My understanding stopped at what I learned from watching Atypical on Netflix and subconsciously from The Big Bang Theory.
Nina Agrawal: “Which I know they say he’s not autistic but that’s that’s like saying Moby Dick isn’t a whale.”
AJ: That’s Nina Agrawal. We’ll hear more from them later.
At the beginning of April, I emailed the people I interviewed to update them on the state of this podcast. I opened the notes with “Happy Autism Awareness Month!”
Kathy Dow-Burger is a clinical associate professor in the University of Maryland Department of Hearing and Speech Sciences, the Founder and Coordinator of the Social Interaction Group Network for All or SIGNA, and co-director of the University of Maryland Autism Research Consortium. She replied to my email to offer an important distinction. Quote,“The tide is turning with April going beyond Autism Awareness to Autism Month that would include awareness, full inclusion, and empowerment month. It brings it from the passive to the active at all levels.”
So that’s the goal of this episode. To move the non-autistic members of the Maryland community closer to awareness, full inclusion and empowerment of people with autism.
AJ: The Autism Society defines autism as “a complex, lifelong developmental disability that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation.
Autism is a “spectrum condition,”– a condition that affects people differently and to varying degrees.
Professor Dow-Burger explains that it’s important to shift our understanding of autism from the medical model, which seeks to diagnose and “fix,” to the social model, which is strengths-based and seeks to improve skills.
KDB: “If I wasn’t a good writer, I would go to the Writing Center and get help to become a good writer, doesn’t mean that somebody is trying to change who I am. I’m just trying to get better at something to benefit, whatever situation. And I think in this situation of the autistic person who wants to get skills training in whatever capacity that it’s not something that is shameful or a stigma, or looking to fix somebody it’s just trying to enhance a skill.”
AJ: The skills those with autism may work to improve vary. Some people with autism might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions. Autism can also affect fine motor skills and coordination. That can make speech especially difficult, and some autistic people might not be able to speak even though they can understand what people are saying. Some autistic people might not be able to guess how others feel. Some may need help with daily tasks like cooking, or doing their jobs or going out.
That’s why Dow-Burger founded SIGNA: to create a program that offers students specialized training in social communication, executive functioning, and self-advocacy skills.
Autism can also bring extra sensitivity such as, sensitivity to bright lights and loud noises.
Those sensory aspects affect Nina Agrawal. They’re a junior computer engineering student and the president of the Autism Student Group.
NA: “So my sensory like issues tend to get worse when I’m tired or hungry, and sometimes at STAMP it’s like mad crowded, especially during rush hour for lunch like from 12 to 2, so it can be extremely overwhelming and scary trying to go to Taco Bell and like order some food, and there’s a massive line, just throngs of people. And then by time I get my food, I just feel like crying with exhaustion, because it’s like I’m hungry. I have to deal with the sensory onslaught, it’s just a mess like on my, on my brain, you can say?”
AJ: While senses might feel particularly intense for people with autism, so can their feelings of interest and focus.
Junior information science student and the treasurer of the Autism Student Group Emmet Ryan sees his intense interests as a kind of benefit to having autism.
ER: “I’m like really good at like seeing like like patterns and data. And like, I like doing data analysis without a lot of reference materials or, like, the research that other people would need to do. But like it differs for everybody.”
AJ: The main component of autism for him is its effects on his ability to read the nonverbal aspects of social situations.
ER: “If someone thinks I’m talking too quickly or that like, maybe they don’t want me in the conversation. I can’t exactly read the faces, or like the tone of voice as well as other people are able to, like neurotypical students.”
AJ: Nina explained her difficulties within social settings too.
NA: “Socially, it can be a real challenge interacting with neurotypicals especially I think I tend to do better one on one verse in large groups. Because, in large groups, I guess, it’s hard to really get to know a person, and I often get worried that I’m being judged or that I’m doing something inappropriate socially, because it feels like everybody knows how to act in a social situation except for me, so it leads to a lot of anxiety which can really impact self-esteem.”
AJ: Nina too talks about the ability to focus on schoolwork for long periods of time without being distracted, and having intense interests. But, they say the assumption that every person with autism is a savant, or especially good at a particular skill, can be a damaging stereotype.
NA: “I feel scared to tell my professors, like in the math and computer science department that I have autism because I don’t want them to have this kind of stereotype like, “Oh, like you’re supposed to be really good,” because it’s like “No like I’m not I’m not super good, I have to work really hard to get like good grades in this class.” And I think it can be really damaging in general to our self esteem. Like, “Oh, I’m very I’m not very good socially and at the same time I’m not very good at math or music or whatever, so I’m just kind of a failure overall.”
AJ: Both Nina and Emmet say that some people might think autism is an inherently negative thing. Emmet addresses the harm Autism Speaks, the largest nonprofit related to autism, caused in negatively shaping the American public’s understanding of autism.
In 2009, Autism Speaks released an ad titled “I Am Autism.”
CLIP: “I work faster than pediatric AIDS, cancer and diabetes combined. And if you are happily married, I will make sure your marriage fails. Your money will fall right into my hands, and I will bankrupt you for my own self-gain.”
AJ: In 2020, Autism Speaks released a guide for parents of newly diagnosed children that, alongside more helpful advice, compares autism to leukemia and reasons grief would be a normal response to an autism diagnosis.
Nina recalls seeing students promoting the organization during their freshman year at the First Look Fair.
NA: “I saw it on McKeldin Mall like people, there was like an Autism Speaks foundation, and I know a lot of people raising money for these organizations generally mean well, like they don’t mean any harm. But I’d say it’s important to understand that there are better organizations to support than Autism Speaks, like Autistic Self Advocacy Network for instance. I think there’s also the Autistic Women’s Network.”
AJ: The podcast I mentioned that inspired my research, You’re Wrong About, brought to light the harmful legacy that autism misinformation created. That is, the modern anti-vaccine movement.
Before that though, researchers wrongly believed that autism might be a product of bad parenting. Dr. Leo Kanner of Johns Hopkins introduced autism to the world in 1943. He reported that among the children he studied, very few had warm-hearted mothers and fathers, a linkage that would later be discredited. He told Time Magazine that the children he studied were kept “neatly in a fridge that didn’t defrost.” This led to many autistic people being institutionalized for what was said to be their own protection. A focus on the likely genetic mechanism behind the syndrome was decades in the future.
Autism was not an official separate diagnosis in the Diagnostic and Statistical Manual of Mental Disorders or DSM from schizophrenia until 1980. After that, schools were legally required to report autism cases, so the number of children described as autistic grew.
At this same time, the number of children receiving measles, mumps and rubella vaccines was also increasing. Since the features of autism often show up around the time that children are vaccinated —at 12 months to 2 years —some scientists questioned if these were correlated.
In 1998, Dr. Andrew Wakefield of the UK published a journal article that wrongly concluded vaccines could cause autism. His medical license was revoked in 2010 because investigations into his study found that some of the children in his study were not actually diagnosed with autism, and some had already shown signs of autism before they had been vaccinated. But his reported findings had already done damage, by planting the idea that vaccines were in some way linked to autism.
Subsequent studies have confirmed that there is no link between vaccines and autism. Professor Dow-Burger explained that more evidence shows that autism is related to genetics.
KDB: “We know that there is a fair amount of people who are diagnosed with autism, there is autism in the family that there is a genetic component to that which wouldn’t match up with vaccines anyway so how did the subgroups even, you know, of people then show up if vaccines weren’t part of the picture?”
AJ: As the world starts to see the full picture of autism, Nina also wants to expand everyone’s understanding of who is autistic. Autistic representation in the media influences that understanding.
AJ: Have you seen the show Atypical?
NA: I have. Yeah, a few episodes.
AJ: Okay, what did you think of it and is it an accurate representation, well as far as you can say, of the experience?
NA: “While I respected their efforts, I’m getting kind of tired of like this white male stereotype because that’s often a stereotype with autism, like, they’re all white, they’re all male, they’re all heterosexual or asexual. They just make life more difficult for their families around them, they’re nerdy and have no sense of humor. So I’d like to see a diversity I guess of autistic character, with regards to race, gender, sexual orientation.”
AJ: This limited picture of who is autistic might lead to autistic girls and women going undiagnosed.
According to the CDC, autism is more than 4 times more common among boys than among girls. But there is compelling contrary evidence:
A 2013 study published in the Journal of the American Academy of Child and Adolescent Psychiatry suggests that it often goes undiagnosed in girls.
Researchers believe women and girls are more likely to mask or camouflage their symptoms. Which might look like:
- Forcing themselves to make eye contact during conversations
- Preparing jokes or phrases ahead of time to use in conversation
- Mimicking the social behavior of others
- Imitating expressions and gestures
A person’s ability to mask their symptoms depends on whether they have high-support needs or low support needs.
Those words, high or low support, are what autistic writer Jessica Flynn recommended using instead of “high-functioning” or “low-functioning” in an article called “Why Autism Functioning Labels Are Harmful — and What to Say Instead.”
She writes, “The low-functioning label dismisses what those individuals are good at. It takes away some of their humanity… The high-functioning label dismisses the struggles those individuals have. It makes them feel like their disability isn’t as challenging as they feel it is sometimes.”
This conscious choice in the way we think and talk about autism can make the world more inclusive and empowering for autistic people.
Language matters. You may have noticed me toggling between saying “an autistic student” and “a student with autism.” “Autistic student” is an example of identity-first language, while “a student with autism” is person-first. Nina doesn’t have a problem with either term, but they do have a problem with people insisting on one over the other.
NA: “When we insist on using person-first language, it’s like we’re insisting that autism is a bad thing. For instance, like I just say I’m Indian, I don’t say a person of like Indian origin because that’s just who I am. And for people who define like autism as a part of their identity, using person-first language can be harmful. But some people at the same time might be more comfortable with person-first language, because I think it becomes very easy for autism to kind of swallow everything about ourselves, so it can basically makes up entirely who we are, when it doesn’t necessarily have to be that way. Like I can have multiple identities, multiple aspects of my personality, other than just autism. So it’s important to recognize that. So my thing is like bottom line, people should use whatever terms make them feel most comfortable and not just be pigeon holed into “I have to use person-first or I have to use identity-first” and it’s really important especially for parents and professionals to actually listen to what the Autistic community has to say for themselves. I tend to use both sometimes when I’m writing because I get bored of constantly saying autistic, autistic, autistic over and over. Sometimes I use “person on the spectrum” and terms like that because that tends to be a more neutral term.”
AJ: Emmet adds more to this in describing where autism fits into his own identity.
ER: “You just cannot assume that just because a disability affects someone’s life, if there was a cure for it, they would have wanted that cure. Quite a few people on the spectrum do not want a cure for that condition because they just see it as part of their personality and not as something that can be removed from them. For example like I feel like if I was not autistic, I would be a different person. And I’m not comfortable with that, like, I feel like autism is an integral part of who I am.”
AJ: In addition to conscious language choices, non-autistic people can take steps to act more inclusively.
Professor Dow-Burger offered advice on how neurotypical students should approach friendships with autistic students.
KDB: “It’s a right of anybody who gets into Maryland, to feel a part of Maryland, and to be open to having a group of diverse friends. Granted, yeah we want to hang out with people who are exactly like us or who like exactly what we like. But to be open and not as a project and not as a, “Here, here. Come with me. I’ll take care of you,” not in that way. But really enjoy them and include them as like, “Hey, we’re all on the same Maryland team we’re Terps you know? Come on!” you know, and to and not to have the expectation of autistic or neurodivergent students to be like us, and to conform to, you know, the NT norm. But to embrace the differences and to allow space safe spaces and brave spaces, and to advocate for that as well.”
AJ: Nina says neurotypical friends can help them by explaining what’s going on in a conversation without getting irritated, understanding if they would prefer to leave because a situation is causing them sensory overload, treating them as one of the group, and calling them out if they say something that is offensive.
Emmet wants UMD students who are on the spectrum and not getting support from SIGNA or the Autism Student Group to know that first, the groups exist, and second, that there is no shame in receiving help.
ER: “Even though it has gotten more normalized lately, there’s definitely a lot more people on campus who are on the spectrum than I know about. like, the group that I have. Our number before the pandemic we had like five or six people as regular attendees and SIGNA, maybe like 10 or 15, per semester. Like there’s gotta be a lot more people out there who are autistic and just are not comfortable, or not willing or don’t feel like they need the support I would both say like”We’re here, and if you want to want to talk to somebody like just feel free like it’s not something to be ashamed about,” and also like, just because there’s not a large number of people that you know on the spectrum, doesn’t mean that they aren’t out there.”
AJ: With that, I wish you a happy end to Autism acceptance, full inclusion, and empowerment month.
You can learn more about SIGNA at signa.umd.edu and the Autism Student Group at https://terplink.umd.edu/organization/autismsupportgroup.
Thanks for listening to this bonus episode of Offbeat. I’m Amelia Jarecke. Our for music this episode is Motions by Marco Sesay. You can find him on Soundcloud. And follow The Diamondback on Twitter and Instagram @thedbk.
You can find a transcript of this episode at dbknews.com. If you like the show, make sure to tell your friends and leave us a rating and review.
Thanks for listening. We’ll be back the last Friday of the month with a brand-new episode.