Part One: A Strange and Friendless Road, For a Tomorrow Without Tears

or, being a woman (mostly), queer, and autistic. Self-diagnosing, and the fear of an official medical stamp.

Content Warning for mention of the r-slur.

By Katlynn Seghetti.

Over my time working at the women’s center, I’ve been doing a lot more reflection and thinking about the future. Fun topics, assuredly. In this post, I wanted to verbalize my own, and I’m sure many others’, feelings on being autistic in the current climate. 

I was not recognized as autistic, until I took an AP Psychology course in my sophomore year of high school, (2017/2018, to age myself.) I saw the criteria for autism and literally went ‘hm. That all seems average. Can’t be me though, I’m able to take care of myself.” Consider me shocked when, not even months later, I entered the worst burnout state I’d ever been in – not in school, though. I still kept up my grades, still socialized well enough, but at home, I did nothing but scroll on the internet, or play one particular game until my eyes burned. I was lonely, and I couldn’t understand what the hell happened. 

But I still couldn’t be autistic, right? I’m excelling where it matters. I’m not a burden on anyone else. Ignoring the fact that consistently throughout my entire life, my family referred to me as retarded:

• “Why are you acting so retarded?” 
• “Don’t do that, you retard.” 
• “Aw, you’re serious? You’re our little retard in the family.” 

I couldn’t be autistic, I was purposefully refusing gender norms – I’m non-binary, of course. I couldn’t be, I have friends (who would treat me as a pet- one even did so at one of my more recent birthday parties, or make me the butt of the joke.) I couldn’t be, statistics show it’s a ‘boys’ disorder. 

It wasn’t until I was deep in that burnout that I got content online, tagged #ActuallyAutistic. This post suggested getting fidgets, I did so. It helped- but only because I wanted it to. A weighted blanket helped. But again, only because I wanted it to. Anything that helped me wasn’t because I was autistic. It was just because I’d been doing SO much research (…another sign in and of itself,) that I was simply just fooling myself. Then, came the reflection of my childhood, lots of tears, anger, and all that fun. 

Needless to say, I’m no longer in denial – I even got unofficial testing done at the health center here, and was told, “I can’t diagnose you, but I would say you are probably extremely highly likely autistic.” But… I think that’s where this ends. At least for a few years. I don’t need accommodations to succeed, I have a support system at home to help with the things I do need aid with. What would an official diagnosis give me? Another figurative target on my back. We’re an ‘epidemic’, we’re a social media trend, and we’re not to be taken seriously. Being queer, being connected to womanhood, I’m already terribly at risk. There’s no reason to add another one in the eyes of the government, the medical system, and anyone doubting my passions and my ability to do good work.

What I can do, though, is focus on community. My work in the Women’s Center, creating a Neurodiversity club, and connecting with other autistic (and other neurodivergent) adults at UMBC, allows me this. I can give space to those who feel like they don’t have it, and encourage change and progress. It’s not over until (drumroll) there’s a tomorrow with tears.

Part Two: The Journey through Genesis

or, my goals for next semester, and how we get there. 

What does that mean though? Campus-wide, where do all the neurodivergent students exist? Everywhere, and nowhere. You see someone every day, and probably just call them a ‘weird’ kid. Here’s how we can start.

A Neurodiversity Club.

• This is in the works, but it is genuinely astounding to me that, other than the Disability Advocate Union, something like this hadn’t been created. However, neurodivergent people are so rejected, shoved aside, and treated like a bad thing to keep hushed and under lock and key. Why would they feel empowered to create a club? Going through the process of founding this club, it’s so simple but very scary, in a way. Will the people who ‘verify’ that this club needs to exist agree with us? Will the students think we’re doing a good job? The only way to know is to take the jump.

A Neurodiversity Support Group, for students, and for staff and faculty.

• I can only speak for students, but I understand there’s been some frustration getting recognition on campus. Accommodations feel like interrogations, and going to professors is a stunted legal-speak conversation. Let’s get community, connections and actual neurodiversity knowledge around. Well, my group this spring semester will be part of that- starting a group and collecting resources for neurodiversity. It’s a lot of work. But it’s good work. Students deserve to have good work and support. One thing I didn’t expect is how much support I’ve gotten from the Women’s Center, and how many neurodivergent staff and faculty supported my events. I see you, and I appreciate you. I feel like the work I’m doing is deeply fulfilling, and I know that I wouldn’t have gotten as much headway without everyone.

Trained Specialists; both in SDS and for faculty and staff support

• Yes, working with neurodivergent students can be hard. Seeing the invisible struggles, while making sure people don’t ‘overuse’ or ‘abuse’ the supports is valid. Why not add people who know the details about neurodiversity? Who can support staff and faculty in supporting these students? Who can support SDS in navigating accommodations? Who can empower students to get what they need?

Open Dialogue

• Students need information. That’s why we’re students. Neurodivergent students especially. Let’s create conversations about neurodiversty. Change can’t happen without voices. Students don’t feel heard or respected. This is not anyone’s intention, but it is the impact. We can work together to fill in the rift.