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Shit's Tiresome: Or, The Value of Self-Diagnosis

Introductory Note: This post was first published on my old Wordpress site on January 4th, 2022. This was a few weeks after my official medical diagnosis of ADHD, and about six months after I first began to research and suspect I was ADHD and autistic. Other than fixing a couple small typos, this is worded and formatted as originally posted.

Important Note: This story isn’t my usual brand of dry humor. It’s not particularly funny at all, but it is honest. I’m sharing things about neurodiversity, mental health, and lack of acceptance that could be upsetting for some. If you want to share your stories, know that I’ll listen with respect and care. Please read mine with the same. Also, click the hyperlinks for related content.

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I joined Twitter last December in preparation to teach my online pop culture and ethics class. One of our primary texts was # HashtagActivism, which traces the development of social justice movements on Twitter such as # MeToo, # BlackLivesMatter, and so on, so I figured I’d better. Prior to this moment, I had zero interest in Twitter. Prior to this moment, I had never used a # hashtag in my life and had no intentions of doing so ever.


January to September, I spent an excessive amount of time scrolling through Twitter. I still rarely posted, but I began to understand the logic of hashtags (when used in moderation) and I found it to be an incredible resource around academics, politics, and social justice. I used my newfound “expertise” in my current position, developing a social media presence for CIRTL@UIC. And then, as if overnight, I lost all interest. I might check once a week at best now, and I struggled to log in to make the necessary posts and retweets for my job.


In October, I had a brief love affair with TikTok, another platform I had never intended to use. I made a couple weeks’ worth of daily posts about the various animals in my care, complete with multiple hashtags each, and watched hours of other people’s videos. Now it gets opened even less than Twitter. Pinterest usage waxes and wanes, and at my lowest point, I was spending hours a day playing Candy Crush Saga (currently level 1649) or Farm Heroes (got bored around level 650 and deleted it) or a half dozen other swiping games.


…I started Wordscapes about four five days ago and I’m on level 298 455 already.


I kept cycling through obsessions, both with digital media and with art projects. Latchhook, embroidery, quilting, floral arrangements, you name it. Good God, but the amount of art supplies I bought. (I could be a majority shareholder in Michaels at this point.) All the while, an insistent voice in my head was reminding me I had work to do, I had things to read, I had a dissertation to write, for the love of God get up and do ANYTHING.


And I tried, desperately. And I felt guilty and anxious and frustrated with myself constantly. I didn’t lack intention; what I lacked, I thought, was willpower.


Turns out, what I lacked was dopamine.

…….

I’m tired. Physically, a bit, my sleep patterns are off track currently, but mostly emotionally. Now that I have a much greater understanding of myself, my wants and needs, my limitations and strengths than before, I’ve started to recognize all the ways that I’m not accepted, that I’m expected to change, that I hold myself back, that I’m dismissed or silenced or silence myself. And it’s f*cking exhausting. I’m AAA: asexual, autistic, and ADHD. It’s not any kind of official acronym, unless you’re referring to roadside assistance, but it’s a convenient personal shorthand for the three “conditions” which have drastic impact on how I navigate the world, on the relationships I have (or don’t), on the way my brain operates and my ability to work, socialize, and create. (We can also throw in an S for my seasonal affective disorder, but then the joke doesn’t work.) All of these “labels” are relatively recent for me. Realizing I was Ace, or asexual, and learning I have SAD both happened in my first three years of grad school at UIC, between 2016 and 2018. The other two, ADHD and autism, well…those are really recent. Like, in the past 6 months recent. Which has been a bit of a shock, if not a paradigm shift, for the people who have known me for the past almost 30 years (myself included).

………

Sometime in early August, my Pinterest suggestions and Twitter recommendations started showing me posts about adults with ADHD, autism, or both. Because I couldn’t not follow any remotely interesting rabbit hole at the time, I read more. I found more stories, and comics, and articles about people, particularly women, realizing they were neurodiverse. The more I read, the more I saw myself, including in the plethora of posts by others also realizing they were neurodiverse through social media. By the time I came out of the rabbit hole (129 173 saved pins, dozens of articles and bookmarked Tweets, and a couple Kindle books later), I was 99% certain that I was both ADHD and autistic. I was also now very aware of how frequently people, particularly girls and women, are misdiagnosed or refused diagnosis for either of these, and how hard it can be to get an adult diagnosis.


I wanted to try though. Autism can’t be treated (nor does it need to be, as such), and it primarily affects my social interactions which I had been navigating that my whole life. With the ADHD, however, the combination of dissertation, pandemic, moving back home, and steady accumulation of adult responsibilities had decimated the coping abilities I had developed and been using unknowingly for years, and now I was drowning. I wanted help, needed help, and I knew that finding new coping strategies wouldn’t be enough on its own.


You see, ADHD is poorly named. First of all, there are inattentive and combination types of ADHD (I’m the former) where there isn’t any visible hyperactivity—the medical model of, and diagnostic process for, ADHD is based on hyperactive little boys, (thus why girls and women are routinely under-and mis-diagnosed). But specifically, we don’t have a deficit of attention. We have a deficit of dopamine, an important neurotransmitter involved in thinking and planning and motivation, and so our brain is constantly looking for more of it. Our attention is actually very focused, but our brain’s chemical deficiencies control where our attention is focused, not our conscious selves.


So my cycles of social media and phone game obsessions, my continually seeking new and exciting art projects, that wasn’t a lack of willpower or impulse control. It was my brain trying its best to get what it needed in an impossible situation.

…….

Doing research and reading accounts from other people with ADHD and/or autism, as I did a few years ago with asexuality, has been quite literally life-changing. So many things that I’ve struggled with for as long as I can remember now have an explanation, validation; it’s not just me. Procrastination, picky eating, the exhaustion of socializing, touch aversion, the literal pain of eye contact, all of these things aren’t just me being weird, or stubborn, or rude, or mean. It’s literally my brain being different. I have different neurological pathways, different chemical ratios, a different lens on the world. And as with my seasonal affective disorder, another instance of my “abnormal” brain chemistry, there’s not a damn thing wrong with me. I’m not broken or flawed; the struggle comes from living in a world that’s not accommodating, with people who aren’t understanding. Finding names for my experiences, having labels that describe who I am, those moments were like revelation. It was a weight off my chest—I feel lighter and happier because I understand myself, I know better who I am. And yet, I’ve spent more time crying in the past five months than I have for years.

The joy I felt in understanding myself and having answers, or at least pathways, for how to deal with the things I struggle with gets crushed whenever I ask for help and I’m rejected. When I try to explain how my ADHD or autism affect me and require different needs to cope with and I’m dismissed, or worse, I receive anger in response. Every time is quietly devastating.


(Sidenote: a common symptom of ADHD/autism is rejection sensitivity dysphoria, which means being hypersensitive to negative interactions.) Having these labels doesn’t limit me. It’s opening the world wider. Using them isn’t an excuse, it’s an explanation. It’s asking people to meet me halfway, to recognize that when I fail to meet their expectations it’s because we’re running different operating systems, because I don’t understand what’s expected or even know that something’s expected at all. It’s asking for help in overcoming the obstacles that stand in my way because the world, because capitalism and social norms and educational practices are all built on the model of a neurotypical brain. It’s offering you my trust that you’ll accept me and support me and take me seriously, that you’ll believe I’m an intelligent adult who isn’t a hypochondriac or attention seeking and so believe what I tell you about who I am and what I need and why I am the way that I am, for better or worse. ………………

Since what my brain needs is a chemical boost, I needed pharmaceutical assistance to get those chemicals. Coping strategies to support difficulties with willpower and follow through (technically known as executive functioning) can’t get off the ground if you don’t have enough chemicals to create the willpower to use the coping strategies. It’s a Catch-22. Like with the medication I take for my Seasonal Affective Disorder, being dependent on medication for the rest of my life to get the chemicals my brain isn’t producing on its own isn’t a bad thing. It’s a medical aid, just like the glasses I’ve been wearing since third grade and will have to continue wearing for the rest of my life, just like hearing aids and wheelchairs and insulin pumps are for others. It’s necessary, but it isn’t a bad thing.


I lucked out and got an ADHD evaluation about 3 weeks ago, several months earlier than it was supposed to be. They couldn’t evaluate me for autism, but that’s okay—I feel comfortable and confident in my self-diagnosis, and unlike ADHD, there’s no medical intervention for autism, so there’s no need for a diagnosis. Three hours of testing and a short consultation with the doctor, and I was “officially” ADHD. I started taking a prescription stimulant about a week ago and already things have improved. For the first time in my life, my brain quiets down.

………

I still don’t understand small talk, and probably never will. I don’t understand the need to ask or answer rhetorical or obvious questions. When I do have something I want to share, I’m going to completely infodump and talk your ears off—it’s a sign of trust and affection, not being rude. I trust you to share important things with me without prompting just as I do for you, or else I assume you don’t want to share it and I’m not going to pressure you. I miss parts of conversations because I zone out, or get distracted, or have auditory lag, and this means I also don’t talk in class discussions because the conversation is literally moving too fast for me to keep up. I lose my train of thought midsentence. I leave piles of things because it takes me extra steps to complete tasks, or because I literally forget it exists if it’s not in my line of sight. I’m not leaving a mess out of laziness or lack of care, but because it didn’t register while I was focused on other things. I return grades or submit assignments at the last minute because I can only function under the pressure of a deadline—it’s not laziness, or even procrastination, it’s executive dysfunction and time blindness.


Now that my doctor and I are figuring out my chemical support system, I’ve been able to start using strategies that help with organization and time management. There’s most likely always going to be piles and messes, but at least now I can try to manage the piles and notice the messes sooner. I’m really hopeful about grading deadlines when I start teaching again, but in the meantime I’m also researching and leading workshops on how to support students and instructors with neurodiversity, so maybe others won’t have to struggle blindly like I’ve been doing for years.

…… I’ve had some amazing support, especially from grad school friends and my advisor, as I’ve been figuring all this out and trying to adapt. I’ve had a helpful doctor as well, and I’ve done plenty of research to find strategies to help me function in conjunction with my necessary medications.


But I’m also more isolated and lonelier than I’ve ever been before, pandemic included, because I can no longer have conversations with some people without getting hurt or without making them mad despite my best attempts. I often feel unwelcome, and the jokes at my expense about, or unwillingness to accept, things related to my identities feel especially cruel. It’s obvious to me now how my autism affects my ability to communicate with others, and that I miss a lot of nuance and social expectations that create unintended conflict. My ADHD contributes to conflicts around sharing spaces or working with people: washing dishes or doing laundry are monumental tasks for me and I don’t realize how much time has passed between being asked to do something and completing it. A common refrain is that I’m using my labels as excuses for my “failures” when I’m trying to explain how these make me unable to meet expectations.


I’ve gotten to a point in my life, though, where I have a strong sense of self-worth and morality and what I am and am not willing to tolerate. I’m trying to unlearn wrong biases and beliefs and behaviors, relearn better ones, and hold myself and others around me accountable for our words, actions, policies, and practices. It can be difficult and frustrating (on both sides), and I certainly make mistakes, but I want to give and be given respect and care and acceptance.


That means when it comes to my autism, I’m not interested in coping strategies or changing my behavior to fit in better or make others comfortable. Instead I’m recognizing the things I’ve been masking, and allowing myself to talk and behave and interact in the ways that are natural to me. I don’t feel guilty leaving a gathering early because I’m drained, or not attending at all. I’ve bought spinner rings and fidget toys for my stimming, and I’ll shake my legs or chew my nails as often as I need if it helps settle me (which it does). I’m not rejecting politeness or reciprocal interest in conversations, but I’m also not going to worry about making small talk or wearing noise cancelling headphones while talking to someone. I am asking for the people who care for me to try to understand how I communicate and behave, what I can and can’t change, what I shouldn’t have to, and to meet me in the middle.

…………………… Despite my fatigue and frustration, I’m optimistic that things will improve. I know who I can ask for help when I need it and who not to, and I have a plan that should allow me to finish my dissertation on my current timeline and get me to the next stage in my life, hopefully leaving behind many of the stressors I’m experiencing now. If you’ve made it this far, I know this isn’t one of my usual humorous posts. I know it may sound like I’m seeking attention or sympathy or whatever, and to some degree perhaps I am. I want to be seen, and heard, and understood, just like everyone else. But really, I’m hoping that sharing this may help another.


Anyone, women especially, who suspects they might have ADHD or autism or something else but have never been diagnosed—you understand your experiences better than any doctor or other person can. Your self-diagnosis is valid. You don’t have to seek an official diagnosis, but if you think you would benefit from medical assistance then I hope you consider pursuing an evaluation if you’re able. (I recognize I am privileged in having the health coverage I currently do that allowed me this option at low cost.) Anyone who thinks putting labels on themselves (or people labeling themselves) is a bad thing, don’t. Labels that we don’t choose for ourselves can be a bad thing—slut, prude, fag, snowflake, etc.—but the labels we choose for ourselves are meaningful and powerful and liberating. They allow us to name and describe our experiences and our identities, they allow us to find community and safety and acceptance, they allow us to forgive ourselves for our perceived shortcomings and failures because now we understand that it’s not our fault, that we aren’t stupid or wrong or broken. And anyone who has someone in their life who is autistic or ADHD or Ace (or a combination, as there are in fact high rates of comorbidities for these and other behavioral, developmental, and mental conditions), please take this as a sign to do some research, or to ask that person how you can better support them and genuinely follow through, or just take the time to reflect on why you are resistant to accepting them and if “being right” (you aren’t, but I’ll pretend you could potentially be) is worth the pain you’re causing them. In fact, take this as an invitation to reflect even if you don’t know anyone (that you know of) who’s neurodivergent—they may not know it either, or may be afraid to tell you, or you can just consider it an act of being a decent human being. Whatever works. Finally, I’ve been talking about my experiences and my labels, but so many people with other identity labels experience similar things or worse for who they are. Listen to them, believe and accept them, love them without condition, because they need it and deserve it, and isn’t there enough pain and shittiness in the world already? We’re all tired. But we can help each other find rest. Thank you for reading.

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Final Note: There is a ridiculous lack of research and articles on ADHD and autism in adults/from the perspective of people who are ADHD or autistic, which is why most of the links here are to Tumblr/Twitter/Pinterest posts. And most of what does exist is focused on fixing what’s “wrong” or different, like communication styles, rather than A) acknowledging that communication is a two-way street, B) that the expectation is that neurodiverse people should make themselves fit into neurotypical society instead of society being more accommodating and inclusive, and C) recognizing that unless something is causing harm, it’s not necessary to change a person’s behavior or communication. This is problematic because it implies that neurodivergeny people are “missing” something, are abnormal, damaged, or subhuman, or are less valuable than neurotypical people. This is why organizations like Autism Speaks, and “treatments” including applied behavioral analysis therapy (ABA) are considered incredibly harmful by autistic people. Check out the Autistic Self-Advocacy Network instead (and ditch the

).

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