You’re normal. It is completely, totally normal to change our minds about how we feel about our diagnosis.
It’s healthy. All of us have to decide who we are going to be in the world. The human tendency to experiment with new identities peaks in adolescence, but it never goes away. We are always testing who we want to be, and working with different labels and roles in life.
You’re not “in denial.” You’re not trying to get away with something bad. Just about every Disabled person I know has encountered imposter syndrome at one point in their life. Sometimes we feel like an imposter when we agree with our diagnosis, and sometimes we feel like an imposter when we don’t agree with it. Those feelings are true, but they based in emotions, not facts.
You don’t have to know who you are now and stick with that idea for the rest of your life. Changing your mind doesn’t make you a traitor or a liar.
Your diagnosis should serve YOU. Not your parents, your doctors, your teachers, or the next door neighbor. There are plenty of articles on this page about how psychiatric diagnosis is a “soft science,” which is a fancy way of saying they have no real hard evidence. We label people after piecing together evidence of how they may feel on the inside, based on how they look on the outside. It’s so subjective, which is why it matters if it’s actually helping you or not. If a label is not helping you, you shouldn’t have to keep it.
When I was a little girl, I was labeled with special needs. In those days, we called kids like me “classified,” which sounds like it should be a lot of fun, but really isn’t. It was supposed to spare us the humiliation of being called special ed, except that everyone knew what that code meant. The secrecy made it seem like something terrible.
My life in elementary school was so very painful. I spent a lot of time crying under my desk. It took me three times as long as anyone else to finish my work, and I never understood what was going on in the classroom. Needless to say, I was not a popular kid. I was very smart, but the idea of 2E (twice exceptional) had not been popularized yet, so people heard that I was classified and assumed that meant stupid. Besides, part of my problem was with expressive language. So, even though I understood a lot, I wasn’t able to express what I knew.
In one way, my time in the special education really helped me. When I was one-on-one with the teacher, I could hear her directions. Once I was granted access to special ed services, I advanced four grade levels in math in under a year. But I was terrified of the special education room, and upset that other children got to do fun things while I was stuck in a literal attic with an adult I didn’t know, doing remedial drill work. It never occurred to the adults in my life that they should ask me what I wanted from my education. I was 20 years too early for that kind of conversation.
By the time I entered high school, I was at the peak of my game. I knew the rules of how to do school. And I knew how to do it well. The honors-level science teacher recognized that I was very advanced in my understanding of science and let me into his honors-level class, which meant that I was finally in a class where my abstract thinking and problem-solving strengths were useful. I didn’t need special ed accommodations anymore. I wanted to experiment with what it was to be unclassified. To be just normal. The school, and my parents, let me do that.
To be clear, this was a massive privilege in our ableist society. We grant people with higher intellect more respect than we grant people with lower intellect, and I was finally able to leverage that when I was in high school. I was also able to leverage white privilege. Good white girls were just expected to be able to handle honors-level work. My being in those classes fit the narrative well, so it was easier for the school administration to envision it happening.
Then, when I entered college, the rules changed. University work was different. The university social scene is very different. I wasn’t able to keep up.
This is what we mean when we talk about the social model of disability. I was the same person, but in high school, I didn’t experience Disability. In university, I did experience Disability. The environment changed. I needed more supports to succeed. In the social model of disability, Disability is defined as something the environment does *to* us. We’re disabled by the environment, not by any fault of our own.
In my lifetime, my condition has been called: failure to attach, pervasive developmental disorder, learning disability, auditory processing disorder with ADD non-attentive type, Aspergers, and ASD level 1.
The powers that be will likely change that diagnostic label again, but I’m the same me. I still don’t hear speech sounds well, and my brain naturally focuses on the smallest of irritating sounds, like the thump of a neighbor’s radio or a dripping sink. I still have a hard time expressing myself when it matters most, and I still a have a hard time following a group when they are working together on a project.
From a certain point of view, it doesn’t matter what people call it, but it does come down to one reality. I perceive the world in a different way than most other people perceive things. That difference creates a lot of misunderstandings on both my part and the part of the people around me.
In the late ‘90s, I got into alternative medicine, got a graduate degree in acupuncture, and decided that my diagnosis was a fraud. My traits, which had been reclassified into Aspergers syndrome at this point, were probably a result of gut disharmony, heavy metal toxins, or (I kid you not) being possessed. I felt I didn’t really need a diagnosis, I needed a macrobiotic diet and a new-age shaman. I saw my troubles in school as being a result of the school being messed up, not me, which I still hold to be true. I thought the therapies I had been given were bullshit—again, also still true. But I also held that maybe I never really needed help. Maybe I was always just bullied. Maybe I was just shy and anxious.
That’s also not the end of my Disability story. It turns out that the work world is not all that different from school. I still kept losing jobs because of social mistakes. Everyone makes mistakes, but I made mistakes over and over again. I couldn’t keep myself organized. I didn’t understand who to trust and who was acting friendly but really using me. The environment at work was disabling me again. I started to embrace Disability with a capital “D” again. This time, I mostly arranged accommodations for myself. Eventually, I started my own business where I could do things my way. I hired people to do the cleaning and some of the paperwork that I found to be mystifying.
Around the same time, the adult autism community started to assert themselves. In this community, I discovered other people who had some of the same experiences as I have. I discovered new ways of looking at my disability. I discovered that I don’t have to choose between being well-adjusted and being Disabled. I can be both.
This is my story. You’re going to have your own. I happened to land on embracing my Disability status right now. I wouldn’t be writing this if it didn’t. But that doesn’t mean that my way is better than yours. Some people find a position in the world where no Disability label or identity is needed. That’s OK, too.
The only warning I have is this: When you lose the label, you lose the supports. It’s not nice, but it is the way that our society works. As adults, we don’t have to submit to any therapies that don’t serve us, unless we’re in the special category of having a judge order us to do so, but if you do need the environment to be altered in order to allow you to function in it, that diagnostic label is usually the way that is going to happen.
For me, that label is also the key that I need to connect with young people who share a few of my more unusual strengths and weaknesses. I was mentored by someone else and now I get to do the same for others. We found each other because of that diagnosis. It’s come full circle. What used to cause separation from my peers now causes connection.
I know this is a bit of a sunny, best-case-scenario declaration. Life is messy, and we often feel pressured or forced into taking on diagnoses or labels that don’t work for us. But I believe we should be fighting for a world where this is true: Diagnosis should exist only to benefit the person getting that diagnosis. That goes for cognitive diagnoses as well as mental health diagnoses. This goes for kids as well as adults. It goes for people with subtle disabilities and disabilities that are super obvious to outsiders. We should be fighting for a future where the person being labeled has the ultimate say over how doctors and therapists view them.
I’m not talking about simple diagnoses like a fractured ulna. I’m talking about a matter of identity. All those diagnoses that speak to who we are and how we think. We should get a say about that.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.