Justin Robbins is an autistic advocate who champions inclusion, awareness, and acceptance. In his TEDxTalk, "Who's Afraid of the Big Bad Autism", he challenges problematic narratives about autism and inspires us to rethink what it means to be autistic.
Tell us about yourself.
I am a recent graduate of Tufts University, having double majored in biology and history. My focuses were in ecology and Africa, respectively. This fall I am starting graduate work in biology at Syracuse University. In college I founded and led the Coalition for Autism Support at Tufts (CAST), a support and advocacy group by and for autistic students. I was also president of our tabletop gaming club, one of my primary high interest areas. My favorite games are Twilight Struggle (an area control game about the Cold War) and Sentinels of the Multiverse (a cooperative superhero card game). I also love Doctor Who, Star Trek, Nickelodeon’s Avatar universe, and the musical Hamilton.
As an advocate, I want to fundamentally change the way people think about autism. I’ve worked to create a community where there was once only isolation and fear. At CAST, we hold weekly discussions open to all about some autism topic. It’s a great place to ask questions you wouldn’t be able to ask anywhere else, and get answers. We also hold events beyond that, including movie screenings and a “High-Interest Trivia Night.” Our most successful events have been our annual panels, where CAST members share their experiences being autistic, then open for questions from the audience. I’ve also given a TEDx talk, “Who’s Afraid of the Big Bad Autism?”
When and how were you diagnosed with autism?
I was officially diagnosed in January 2017, but the real story begins years before that, in 11th grade. I didn’t have a lot of friends in my classes that year. I was talking to a friend about this, when I said “And every time I do try to make new friends, it’s like I have a social disability!” To my great surprise, my friend, replied with the equivalent of “uhhhhhh” (he had suspected for years). This made me incredibly paranoid; was there something wrong with me, painfully obvious to everyone but myself? Was everyone around me being kind just to be polite?
I talked to my therapist about it, and she recommended testing (unofficially, given the complexities of a formal diagnostic test) for autism (Asperger’s syndrome at the time). The questions hit home with uncanny precision. Did I have high-interest areas that I talked about ad nauseum, irrespective of others’ interest? Yes. Did I have difficulty with social interactions? Yes. While not as “obvious” in me as others, or even me from ten years ago, there was no ambiguity; I was autistic.
It was a wonderful feeling. For the first time, my life made sense. This, by the way, is a great example of why seeking out the perspectives of actual autistic people is important. For many parents, finding out is treated like a disaster, an epic tragedy on par with the child literally dying. It’s just assumed we feel the same way, when anyone bothers to think about our feelings at all. But our near-unanimous reaction when we find out (as a young adult or older) is “Oh my goodness this explains everything! I wish I had known this ten years ago!” A diagnosis is incredibly useful and reassuring. Think about it: we tend to like having things clearly laid out instead of having to piece together tiny subtleties of a highly abstract nature. Not to mention the emotional closure of having an actual explanation to a large portion of ourselves. It also helps us better understand our strengths and weaknesses.
Being diagnosed doesn’t change who we are; we were always autistic. And we more often than not get the feeling that we’re not normal (as I did). We don’t get that normal neurotypical (non-autistic) life anyway, and hiding the truth from us only makes it worse. Moral of the story: if you are the caregiver for an autistic person: tell them sooner rather than later!
In 2013, you founded the Coalition for Autism Support at Tufts (CAST). What inspired you to create this group?
The idea for CAST started in high school. I thought about all the great resources available for queer students, and I wished things like that were available for autistic people like me. I was not in a good place in high school, and really needed the help.
Then, on the first day of college, something strange happened: I met a guy. A freshman, just like me, and he was the first confirmed, in-person autistic I had ever met. Being able to share your experiences and be validated and understood is a powerful feeling. I floated the idea for CAST by him, and he loved it. Our school’s LGBT Center put out an announcement in its weekly email (a great example of intersectional advocacy), and we had our first meeting.
CAST meetings are a place where you can talk about your autism without judgement, where you can talk about things that matter to you, and be understood and respected. Over my four years as president, it became far more than anything I could have imagined. First and foremost, it became a community. Growing up, we’re made to feel like outcasts, alone in a sea of neurotypicals. The only other autistic people we’ll likely ever see are others being "treated." It doesn’t have to be that way. Autism can obviously differ radically from person to person, but there are so many experiences that unite us, like troubled social interactions and high-interest areas. The neurotypicals in our group learned a lot about autism as well, and we learned from them. After all, we need someone who knows the answers to our social questions!
Towards the end of our second year, we started branching out into more direct advocacy. This was a big step, and one I’m glad we took. For many people, even knowing of CAST’s existence can be a game-changer. Autism is seen, in many respects, as the ultimate “other”, but here we are! We’re a part of the community, we think, we feel, we communicate. Through our panels and outreach, we’ve had a real impact at Tufts and beyond. I don’t just mean people being more knowledgeable as they go about their lives. For example, we got several local groups to stop supporting the very problematic Autism Speaks, and others to place a greater emphasis on skills for the transition to adulthood rather than on childhood conformity.
In your recent tedx Talk, "Who's Afraid of the Big Bad Autism?", you explore problematic narratives in the autism community. Tell us more about why its important to add nuance to conversations about autism and make shifts in how the autism spectrum is represented.
Most of these narrative problems go back to the same core issue: autistic people are not listened to in conversations about autism. As I discuss in the video, parents are seen as the be-all and end-all when it comes to knowing about autism. The idea that parents perfectly know their child isn’t true for normal kids; why would we assume it’s true for children with disabilities like autism? This very question is indicative of that paradigm. To me, “autism community” means autistic people who do things together, such as advocate — not the parents, caregivers, and psychologists. This deferment away from actually autistic people has insidious consequences.
It reduces us to something less than human, unable and unworthy to have any control over our lives. Neurotypical feelings and desires, like the idea of autistic people being broken versions of normal ones, are projected onto us, whether we like it or not. There is no chance to learn from mistakes because you never consult with us and you’re convinced that you’re right and we’re wrong by default! Stimming is a great example of this. One of the most obvious signs of autism, many interventions aim at stifling it. But stimming is a way of expressing emotions and coping with stress; stopping it is the worse thing you can do! But because it’s so different-looking, and because professionals haven’t bothered by-and-large to verify their assumptions, it’s pathologized.
The most fundamental narrative change I work to convey is that there is nothing inherently tragic about being autistic. Parents often mourn the child that never was, perhaps for too long in some cases. We know of no other life; we came into this world autistic, and it colors our every experience, for good and ill. Autism brings incredible hardships, both from us to others, and from others to us. And I know how painful it can be; I actually don’t discuss the full despair I felt around high school’s end with anyone but a handful of people I would trust with my life. But it brings joy too, the joy of passionate interests, of finally making the social connections on your terms that really count.
My passion for science helped me get into Tufts and then graduate school. I also rewrote Hamilton’s opening song to be about Avatar: The Last Airbender, and have made many genuine friendships because of my high-interest areas.
The other main aspect I argue against is the harmful barriers people establish within the autism spectrum: the dichotomy between “high” and “low-functioning”. These divisions are arbitrary, false, and harmful. When someone calls me high-functioning, they don’t know my GPA, they don’t know how well I manage my personal affairs; they know nothing other than what I’ve chosen to reveal. When people call me high-functioning, all they’re saying is that I don’t match the stereotypes; that I seem normal. What kind of a metric is that? I’ve had people dismiss my opinions because they think I’m not autistic enough, and others who decide I’m too autistic to understand what they have to say!
Stereotyping is a problem. If someone is dismissed as low-functioning, then they’re not going to be respected or listened to. Growing up, they’re not going to be given the support to reach their potential, because everyone believes they have none. When you’re classified as high-functioning, you’re assumed to be perfect and always have been. Any and all struggles you’ve had, have, or will have are ignored. You don’t get the support you need, official, emotional, or otherwise. There’s also the stereotype that high-functioning autistics must be geniuses like Isaac Newton. I call this the Newton Fallacy, and it’s unfair to make our humanity, and the respect that everyone is entitled to, dependent on legendary accomplishments. You have no idea how painful it is for someone to dispute a core aspect of your identity because you dare to defy stereotype. No one should have to go through that, yet that’s our “reward” for passing for normal: to never be accepted for who we really are, and have all our respectability dependent on never making a social mistake or otherwise revealing our autism EVER. Being considered high-functioning or normal isn’t a reward; it’s a threat.
What next steps do you recommend to achieve greater autism acceptance and inclusion in schools, workplaces, and communities?
We can start with language. You may have noticed that I have been using autism as an adjective, instead of “with autism”. This is very deliberate. Autistic people definitively prefer being called autistic. Why? Autism is a fundamental part of who we are. When you say “person with autism,” you’re saying that the two are separateable, that being affirmed as a person is contingent on the autism being absent or removed: a person, then the autism. Think about it: you wouldn’t use the phrase “person with gay”! Think about how dismissive and pathologizing that sounds, and you have an idea of how we feel. Autism has been a part of my life and neurological structure since the day I was born: “curing” me is as immoral as it is biologically impossible.
When talking to us, please don’t use that higher-pitched voice you use for young children and pets. It’s extremely rude and a dismissal of anything we have to say because you think we’re nothing more than small children.
Beyond that, we need to rethink how we think about autistic traits. Too often we classify them as a problem simply because they are different. Stimming and avoiding eye contact are good examples of this: it doesn’t actually harm anyone, actually quite the opposite. Regarding high-interest areas, I would talk about astronomy all the time to everyone when I was little. My issue was regulating my topics and the amount I talked with others, not with the fact that I loved astronomy. There is (or should be) a time and a place for that, because us autistics should, in principle, be entitled to the same benefits of social reciprocity if we do our parts. My motto is adaptation, not assimilation.
I maintain that socializing is an incredibly difficult subject, and the only reason this isn’t universally acknowledged is that everyone else happens to pick it up naturally. Just look at how difficult it is to get a computer to pass the Turing Test. Autism doesn’t make social interaction impossible, but it means we don’t just “pick it up”, and we have very different means of determining when and how we’d like interaction.
Part of being autistic means having to acknowledge and deal with your mistakes on a daily basis. We don’t have much choice in the matter. It’s a tiring and often painful process. Yet, for our non-autistic peers, we continue anyways. I ask that the non-autistics reading this have the same willingness for improvement and to admit when they are wrong. There can be no progress when one group is always assumed to be in the wrong, and all others assumed to be in the right. Admitting mistakes, especially big ones, isn’t easy. We know, but this is too urgent to dismiss our criticism because we “just don’t understand” or “aren’t autistic enough".
What advice do you have for other young adults on the autism spectrum, particularly individuals who are interested in leading advocacy efforts?
First and foremost, there is no other version of you. There is no non-autistic version of yourself. You are you and you alone. You are not the defective version of another being. Accept who you are and make the best of it.
The thing about your identity is that it’s yours; within reason, you can do with it as you please. Maybe you consider autism a major part of your identity, maybe you don’t. Either (and everything in-between) is completely fine, but that’s your call. No one else gets to tell you that you’re too autistic, or not autistic enough, to count.
You’re going to make a lot of mistakes. To err is human, but we have more than our fair share. It stings, but admitting mistakes when you’ve made them and striving to do better is the only way to improve.
However, we are implicitly taught that whenever there’s a mistake, it’s always our fault. That’s not true. We make mistakes, a lot of them sometimes, but we are not inherently guilty. It’s not always your fault.
In terms of advocacy, read the essay Don’t Mourn For Us by Jim Sinclair. This is the founding document of the Neurodiversity Movement. Everyone who interacts with autistic people at all should read it. The Autism Self Advocacy Network (ASAN) has a ton of great resources available as well. Remember: autism is nothing new, only our understanding of it. It isn’t a medical crisis; it’s a social movement.
Your worth as a human being doesn’t come from your ability. Your ability to speak, or write well, to get into college, or have a special talent doesn’t justify your existence: you do, inherently, by virtue of being alive. Remember the Declaration of Independence: we’re all endowed with the unalienable rights of life, liberty, and the pursuit of happiness. When you’re trying to come to terms with who you are, and trying to sift through existing information, (I know) it can be tempting to reassure yourself that you’re “high-functioning.” I’ve already talked about the pitfalls of this, but it’s worth repeating: don’t do it. This is why I hate the defense “Some of history’s greatest geniuses were autistic." Be proud of your talents, but know you don’t need them to defend your existence, and don’t throw other, less fortunate autistics under the bus.
As for high-interest areas, pursue them, be proud of them. Do your best to find others who respect or share them; that’s what makes a great friend. Having a passion for something truly is a gift, so don’t let anyone else take it away from you or make you feel shame for it.