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Jackie Schuld Art Therapy Blog

Writer's pictureJackie Schuld

Maybe You're Dealing With More Than ADHD? A Late-Identified Autism Interview

This is the 45th interview in my series Interviewing Late-Identified Autistics. Madison is a late-identified autistic. My questions are in bold and Madison’s responses follow in regular typeface.

 

Madison Sasser

What name do you use and, if you want to share it, what pronouns do you use?


Madison Sasser (she/her)


How old were you when you learned you were autistic?


I was diagnosed with autism at 23 years old.


How did you learn you are autistic?


I was diagnosed with ADHD at 12 but went through school without accommodations. I thought I could outwork my ADHD. I had just finished my Bachelor's degree a year early. I was working at a well-respected law firm with plans to apply to law school, and suddenly I couldn’t keep up.


I always felt like I was always behind in school. I would study, and my best would be 85%. My friends were getting into their dream schools, and I got wait-listed at my backup choice All my assignments were late. My handwriting wasn’t legible. I could finish an assignment, but I would have to stay up all night to finish it. I thought that was normal and that I just wasn’t working hard enough.


I made typos that a grammar checker couldn’t catch, like using the word "meditation" in place of "mediation." I mixed up trial dates and sent the wrong dates out, but what concerned me most was that I was getting feedback from my office manager that didn’t make sense. Suddenly, I was “stepping on people’s toes.” I emailed a subcontractor because I was curious if she kept marketing stats and then got called into the managing partner's office and was told to “stay in my lane.”


I couldn’t figure out what I was doing wrong. Those were all the qualities that people usually liked about me. Sure, I made the occasional typo, but didn’t everyone? I spent days before the meeting with the managing partner researching ADHD and other learning disorders. I knew I was giving it my best; for most people, their best is enough. It didn’t feel like my best was enough, so I needed to find an answer to give to my co-workers. I didn’t want to keep making the same mistakes.


Then I stumbled upon non-verbal learning disorder research and its connection to autism. The research confirmed that maybe I was dealing with something more than ADHD, and I wanted to get evaluated, but it took me a year to find someone to evaluate me. It’s frustrating that there’s a stigma about getting evaluated, and how a person seeking accommodations are perceived as lazy or entitled, but other people must work with me, and I wanted to give them a framework to communicate with me and stop making mistakes everyone else found frustrating.


The more research I did, the more I realized that I really didn’t understand autism because I thought it was for people who didn’t feel emotions and kept a rigid routine. I felt too much. I was (am) chaos. I wanted to save the world and become the first female president, and the responsibility of how deeply I felt for the world was overwhelming. Once I realized that most of the research on autism I was reading was about men and that autism (especially with an ADHD comorbidity) presents differently in women, I started reading content from women with autism, and it felt like me.


How do you describe autism to people who are not familiar with it?


My roommate said once that it’s not that I don’t understand implied social cues, but that I react as if they were said, not implied, which can make my reactions seem aggressive from a neutral perspective. My autism is hard to describe because it impacts many areas, not just one trait. I get to the point. I’m honest. Some people see honesty as part of the autistic identity. Those people would say it’s physically painful for autistic people to be inauthentic.


I do have what would be considered special interests. I dragged my mom to political rallies when I was ten years old. I’ve written poetry and attended creative writing classes since high school, leading to the launch of my blog at 23 years old. In college, my special interest was getting into law school and becoming an attorney. Now, it’s becoming a paid writer. I’ve heard it’s important for autistic people to align their careers around their special interests. It’s not necessarily the interests that make it an autistic trait, but the room those interests take up in my life.


My roommate is neurotypical (as much as anyone is neurotypical and not somewhere on the spectrum like us), and she’s a good sounding board for what behaviors are part of my autism. When I come off a ten-hour serving shift, I shower, then go straight to writing a new article. She says most people come home, eat, relax, and unwind. I don’t always keep up with the dishes in the sink or eat at the same time, but I’m always thinking about the next blog.


And that’s why my autism is easy to miss. I’m doing what capitalism says I should do. I work double shifts, but then I write into the early morning hours. I’m trying to build a writing brand.


Most of my interests are considered normal but not always ladylike. I’ll tell off the CEO the same way I’ll tell off a shift manager. What’s right is right. Some people consider that a rigid, black-and-white interpretation of the rules.


I’m also terrible at small talk, which has become even more difficult as an adult. What do you say when someone tells you they have a new baby? Congratulations on all the sleepless nights to come? How do you keep another being alive?


Social dynamics became harder for me when I joined the workforce. Power differential and a multi-generational workforce are really hard to navigate. How do you listen to people talk about home repairs when you have $5 in your bank account? It’s uncomfortable.


My autism drives me to study the nuances in public discourse and operate as though other people also understand it, only to realize that they don’t. Why aren’t you guys up to date on the statistics of maternal mortality in the United States? Aren’t you updated on what phrases are considered covert discrimination? You’re not? That’s awkward.


How have you modified or adapted your life since learning you’re autistic?


I decided not to apply to law school after getting my diagnosis. I could have applied, but pursuing a career that determines financial viability by how many hours an attorney can bill was pointless to me. Accepting my autism means accepting that it takes me longer to process information and decide what to do with it. Yes, employers are required to make reasonable accommodations, but I’m learning that no one has defined what reasonable accommodations are to employers. Would it be reasonable to pay twice as much and wait twice as long because your attorney has a processing disorder? The client would refuse, then I would be penalized for the extra hours. I understood how that would play out in the end and realized that, while I could do it, I wouldn’t want to spend the rest of my life fighting neurotypical institutions that weren’t designed with me in mind. This concession makes me sad because I know I would have been a great lawyer and I miss that competitive part of myself.


My childhood dream was to become a writer. I didn’t originally pursue it because I didn’t think I could make a living doing it, but with the advent of social media and other movements within the industry, I realized that I could make money as a writer if I diversified my income. I now run a blog with 1.9K followers. My Twitter has 15.4K followers. I’m working on building a platform that will get my writing distributed. I eventually want to launch a podcast or a YouTube channel. I’m also working on grad school applications for an MFA in Creative Writing. Most programs will pay for tuition and living expenses if you teach undergrad classes. My plan is to get accepted into one of those programs, make connections in the industry, then write and teach to supplement my income.


I know that so much (too much) of how I process my autism is wrapped up in my career. I don’t love that for myself or for other autistic people, but living independently is important to me. I’ve interned in family law and have seen too many people without financial resources stuck in abusive living situations, so for me, it’s all about having the resources to leave. I don’t want to be stuck in an abusive situation because I’m financially dependent on someone. Part of accepting that you have a disability is accepting that maintaining employment may be difficult. I don’t know why it is so difficult. I feel like my autism really isn't that hard to accommodate.


What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?


I’m working with a government vocational rehabilitation agency to find a career path that matches my skills. The agency provides me with a counselor that helps me determine my career goals. The agency also paid for my autism assessment, vocational assessment, therapist, career coach, and psychiatrist.


It took me a year before this service to find a professional to evaluate me as an adult. The stress the pandemic put on mental health services didn’t make finding an evaluation any easier.


My therapist is actually autistic herself. Before agreeing to meet with them, I called professionals and researched their backgrounds to see if they were neurodiversity-affirming. I knew how common it was for women to get an incorrect diagnosis because of the stigma, so I wanted to give myself the best chance at getting a correct diagnosis the first time.


Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?


I would recommend anyone who wants to explore if they might be autistic to read work directly written by autistic people. Research journals can’t tell you about the day-to-day realities of living with autism. They can’t tell you how your family or your employers will react. They can’t tell you how your partner will react or how it will impact them. Autistic people can. Autistic people can also tell you their coping strategies and how they navigate the world.


Autistic authors I recommend are Helen Hong, Chloe Liese, Devon Price, and Jennifer Cook (formerly Jennifer Cook O’Toole). The Autistic Culture Podcast is also a great podcast.


Maybe someone curious about exploring autism won't have autism, but learning about the autistic experience makes society more equitable for everyone. Accommodating autistic people also benefits people who aren’t autistic, and it’s really easy to make small changes like clarification in communication that wouldn't cost anything.


What do you wish others knew about autism?


There isn’t a cure. There isn’t even an objective standard of what makes my way of processing information wrong and everyone else’s standard right. It’s so frustrating to be diagnosed with a condition that impacts your daily life and employment with no clear way to fix it. I don’t think I need to be fixed. I don’t think there’s anything wrong with me. I see the world differently. Diverse perspectives make us better, but I’ve found that most people aren’t curious enough to include me in the ways that work for me. They think I’m wrong. They think I’m exhausting to be around, and I don’t know how to change their mind. I’m still me. I’ve always been me. I don’t know why that’s so hard for people to understand.


So many peers have disclosed their autism diagnoses to me since I went public about my diagnosis. They aren’t public about their diagnoses. You could be talking to people about how vaccines cause autism without even realizing the people you are talking to are autistic. There isn’t anything wrong with us.


Autistic people work next to you. Autistic people go to the grocery store or out to dinner. Autistic people go to the doctor and to the dog park. Maybe not the dog park. A lot of autistic people I know prefer cats. The point is that autistic people are part of society. We have every right to be here and to occupy space. We shouldn’t have to make our autism more convenient for everyone around us when people can’t even bother to learn anything about us. It’s a two-way street.


If someone would like to connect with you, how can they reach you?


I’m most active on Twitter. My username is @Madiii03.


I’m also active on LinkedIn.


And, of course, my Medium blog:


Do you have any works, websites, or other creative ventures you would like to share with others? (please provide links)


The article that I would like to share is a blog I wrote about what autism feels like to me. I realize that the way my autism appears on the outside is very different than what it feels like on the inside. I want more people to know what it feels like.


 

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