Autism Feelings: Anger at Professionals?
In which I recall that one time I was misdiagnosed with a personality disorder and I am not 100% sure if anyone really deserves this anger but I email my previous therapist anyway
Evaporation & Condensation
When I clicked “Publish” on the “Anger at Parents” essay, I was anxious to keep going. I was going to be so mad at my teachers and therapists and doctors that [Yosemite Sam impersonation]. And I was going to write it so hard. There would be so much righteous anger.
But then I approached it piecemeal and the anger started to evaporate from my body and condensate on the interior walls of my house. It was wild to see—kind of clammy and clay colored, like something from a Cronenberg film.
Series Note
This essay is part of an ongoing series in which I explore each of the feelings that washed over me when I received my diagnosis of Autism Spectrum Disorder (ASD) at forty two.
Teachers
Was there any good reason for me to be mad at my teachers for “missing my autism”? Even at any single one of them? No, not really. I kind of already covered that sideways in the “Anger at Parents” post. Most of my teachers were pretty great. Even the duds were just kind of duds. Even the duds seemed to care and tried their best to work with me and to get the best out of me. It wasn’t within their purview to diagnose anyone with anything. I’ll never know whether or not they tried to communicate whatever struggles I was having to my parents. I’ll never know whether or not they tried to nudge me toward counseling or assessment behind the scenes.
Medical Doctors
With one or two outrageous exceptions (that are not on topic), most every doctor I’ve ever gone to for help has been pretty great. Even the resort doctor who patched up the toe that I broke like a dumb dumb while I was on my honeymoon was an angel living among us. Thank you, resort doctor! Thank you, most doctors!
Doctors specialize. If any of mine—even a generalist—had said, “Young man, has it ever occurred to you that you might have autism?” after I had dragged myself into an exam room disoriented and full of shame because of a really bad sunburn or whatever, that would have been remarkable.
Mental Health Professionals
Walking back through my experiences with mental health professionals, I realized that I had gone to see most of them with a specific concern in mind. In college, I had gone to the counseling center after my freshman year because I was depressed and had fallen painfully behind in several of my classes. They helped me with that. With some minor variation, that happened a few more times over the next few years, and each time I got the help I was seeking. Around the same time, my first psychiatrist got me on and off of Zoloft successfully to help me through a particularly bad period of depression.
When I went to the counseling center in grad school for ostensibly the same reasons, they helped me again with my depression, but they also got me to take a hard look at my alcohol use at that time. They were right to call it out. It certainly wasn’t helping.
Essentially, my experience with mental health professionals up to a certain point in my life was like bringing a car in for an oil change and leaving with an oil change. Once or twice I got a surprise tire rotation. Expecting any of those mental health professionals to have diagnosed me with autism or referred me to a specialist for diagnosis would have been like expecting my mechanic to intuit that someone had hidden a plastic dinosaur in my coolant expansion tank because of the way my car was avoiding eye contact and fidgeting.
Frankly, traditionally, diagnoses of differences like autism happen mostly when we’re young. Our adults see us struggling and steer us toward names for the things that have been hampering us so that we can get appropriate services—to help us while we’re in prime help space. It just didn’t happen for me that way. It’s hard to feel angry at the college counselors and other mental health professionals from my adult years who were focused on making sure I didn’t sadness myself to death.
One Mental Health Professional in Particular
After teasing all that apart, I have to admit that my anger at my teachers and doctors and therapists over missing my autism wasn’t really stemming from a lifetime of misses like it felt that it was when all my post-ASD-diagnosis feelings first welled up. I think that I broadened it out to “all those professionals” in my mind because the specific story that comes to mind first isn’t one that I’ve ever told anyone other than my wife. I’ve been ashamed to share it. Afraid, even. But, here it is, still damp with shame:
In 2019, I was misdiagnosed with Obsessive Compulsive Personality Disorder (OCPD).
Note: OCPD is not to be confused with Obsessive Compulsive Disorder (OCD). I know. Dumb, right? What were they even thinking? Anyway, rather than risk taking up a lot of space in this essay by poorly explaining the differences myself, I will encourage you to just Google it. There are clear lists and graphics readily available. The key difference for our purposes? OCPD, the one I was misdiagnosed with, is a personality disorder. And society tends to frown upon those.
I didn’t know for sure that the OCPD diagnosis was a misdiagnosis until just this autumn when my ASD diagnosis overruled it. In the years between, the OCPD diagnosis haunted me—poltergeisted glassware at me. Something about it didn’t feel correct to me from the beginning—even when the therapist had me look at a printout from the DSM and talk through some of my behaviors. For the past five years, I pushed that conversation down. When it bubbled up, I would tell myself that it couldn’t possibly be true. But then a part of me would play therapist and tell the questioning part of me that a person with OCPD would of course feel certain that they didn’t have OCPD. Of course they would feel certain that the therapist had obviously just gotten it wrong. Of course they would feel the need to correct the therapist to gain control of the situation.
<Aside>
Am I ashamed to suffer from recurring depression and anxiety? Nope. Not at all. Maybe I was a little bit ashamed twenty years ago just after my first diagnosis, but the two problems are so normalized in our society at this point that I wouldn’t hesitate to talk openly about my depression and anxiety even in front of my boss at work if the situation called for it. Am I ashamed of my ASD? Nope. In fact, I wrote a whole essay about how I was excited to embrace it but felt like I didn’t deserve to embrace it.
Was I ashamed when my previous therapist diagnosed me with OCPD? Yes, completely. I was mortified. I thought, Oh fuck. I don’t matter. I’m no one. I’m a problem for other people to avoid. Nothing I think or do matters or will ever matter or has ever mattered because I have a personality disorder.
The reason I highlight the shame of having a personality disorder as an aside is that it’s a whole other essay that I’m not qualified to write. It’s a whole other essay that I want someone else to write so I can make sense of my mixed up feelings on the subject.
As a society, we’ve made a lot of headway normalizing depression, anxiety, ADHD, ASD, and a handful of other mental health issues. If you’re young, it may not feel that way, but from where I sit, those issues are so much less stigmatized than they were in the nineties when I was in middle school and high school. People would hardcore whisper about you if they heard you were on Prozac.
So, yes, on the one hand, we’ve made headway as a society in our overall acceptance of depression and anxiety and a few other issues. On the other hand, personality disorders? Less headway. I still think of personality disorders as marks for one to hide if one can. There are a lot of things I don’t know about personality disorders. There are a lot of things I’m sure that I mis-know about them. There’s a lot of cultural blood still draining out of my ears when it comes to personality disorders.
I very much want to express the shame that I felt after being diagnosed with a personality disorder that I don’t actually have. But I want to do it without shaming people who actually do have them. It’s not their fault. No one asks for these things. What I’m feeling is really hard to articulate, but I’m trying.
</Aside>
So, right or wrong, for better or worse, I was ashamed of my personality disorder diagnosis because I was terrified that no one would ever love me or want to be my friend if they knew. It also had this strange internal effect of me no longer trusting myself. I’d felt mentally ill at many times in my life up to that point, but I had learned to accept mental illness as illness. The OCPD diagnosis was the first time in my life that I felt really, truly, irredeemably “crazy”, which, tragically, compounded the anxiety and depression that were already disabling me at that moment in my life.
Just a few nights ago, I wrote an email to the therapist who gave me the OCPD diagnosis. The anger was mostly gone. I’m sure there are little traces of anger in the way that I phrased certain things, but I did my best to weed those traces out before I clicked send.
I’ll let the email speak for itself. Here it is in its entirety. I anonymized it and made minor edits for clarity.
Subject: It turns out I have autism
Dear [Previous Therapist],
I hope this finds you well. I wanted to let you know that this fall I was diagnosed with ASD type 1 and ADHD.
I know we met a long time ago—it’s been five years now. So, as a refresher, just as I first started seeing you, I fell into an acute crisis and was very focused on getting documented diagnoses of my anxiety and depression so that I could apply for paid medical leave after internally melting down and being unable to face work for a week or two. I know that put you in a tough spot as a clinician—it didn’t give you a ton to work with or space to sort things out. At that time, in addition to acknowledging my anxiety and depression, you gave me a diagnosis of OCPD with the caveat that it was your honest best guess after meeting with me only a handful of times and after consulting with a colleague.
This year, after my ASD diagnosis, I’ve read a lot about how ASD and ADHD are sometimes misdiagnosed as personality disorders. I went down the checklists and tried to answer honestly. I matched everything on the ASD side of the Venn diagram and almost everything in the overlap, but I didn’t match anything on the OCPD-only side.
I’d been considering writing to you since before I even had my formal ASD diagnosis. Though in the wake of that diagnosis, I still haven’t been sure of my motivations or of what exactly I would say if I were to write to you.
I think it comes down to this: Over the past few months, I’ve connected with other well-masking people with ASD and I’ve heard a similar story to my own a few times. For some, it was a misdiagnosis of Borderline Personality Disorder (BPD) rather than OCPD, but the big beats were all aligned.
It’s an understandable misdiagnosis. Well-masking autism individuals in meltdown mode can behave an awful lot like people with personality disorders. At least, their outside presentations can be very similar. I’m not angry at the misdiagnosis. I was at first—if I’m being honest—but it didn’t last. Not after I really thought about it. These things happen. But I do wonder what the past several years might have been like if I had been learning how to cope with my autism and how to express it to other people rather than wondering what to do with the difficult-to-process suggestion that I may have personality disorder.
Today, I was reading about someone else’s experience and that’s what nudged me to finally write to you. If I don’t tell you, you won’t know. It might happen again to someone else. So, please, I just ask that you take care with this particular Venn diagram in the future. I know that I came in distressed, saying that I needed a piece of paper with a diagnosis right away. I know that put pressure on you to make a judgment call with limited information.
Before my ASD diagnosis, I thought I knew what autism looked like. I thought that I could spot it in a crowd. I was wrong.
I’m “high functioning” in many ways, but my life has been no picnic. I have a wife and children and an office job and I own a house and I look normal enough, but going to work is incredibly exhausting for me because I’m pretending to be allistic the entire time I’m there. I have been mimicking everyone else since I was little. My whole life has been flexing and playing make believe and wondering why things that seem so easy for other people have been so hard for me. Now I know. Knowing that I have ASD hasn’t solved those difficulties, but it has given me a baseline to begin to learn to cope with them and to let people know that I need help with them.
Again, I hope this finds you well. I know that I ended our sessions in a huff. I’m sorry for that. I think you made a good guess but missed some key things that are really easy to miss in an adult who’s learned to mask them out of necessity.
Frankly, no one else caught it either. My current therapist sort of did. It started when I listened to a podcast where someone was describing their path to a diagnosis. I was blown away by how many things I had in common with them. Another important clue was that [a family member] has ASD—something I didn’t know when I was working with you. I took the quickie AQ online and scored high. Then I asked my current therapist about it and she said she’d wondered whether I might have autism, but didn’t want to bring it up until she got to know me better. Then she helped me connect with a testing specialist and now here I am, proudly and formally autistic. I like being on this team—it’s got some pretty amazing people on it.
Even though our sessions ended in frustration, thank you belatedly for your help. It kept me going during some difficult years and it got me from there to here.
Sincerely,
Paul Zaic
Finally, the Cat on My Back
You might be wondering what the picture of Jaxon the cat plopping himself down on what appears to be my dead body has to do with this essay. I received the OCPD diagnosis and—separately, from a medical doctor—a diagnosis of aseptic meningitis within just a few months of one another. The latter merited a multi-day stay in a negative-pressure facility in the hospital for a ten-out-of-ten head-and-neck-ache that persisted twenty four hours a day for more than a week—several days after the doctors and nurses took their masks off and I was sent home, noted as “not contagious”. I can’t remember which diagnosis came first. The sequence is something I could pretty easily sleuth out if I combed through my inbox, but I’m not that determined in this case at this moment. To me, that picture is a detailed emotional portrait of Paul Zaic, 2019. It’s how I will always feel thinking back on that one time I was misdiagnosed with a personality disorder and just narrowly missed being accurately diagnosed with autism—not angry exactly, but with an insurmountable urge to close my eyes and just lie the fuck down.