To the Young Person Who Doesn’t Identify with Their Disability Diagnosis Anymore

Dana M. Holmes
14
2217

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.

Previous articleNew Study Finds Mental Health Effects of Common Hair Loss Drug
Next articleStop Saying This, An Encore!
Dana M. Holmes
Dana M. Holmes is a wholistic health practitioner, special education teacher, and Disabilities advocate. Dana promotes that autistic children and adults can be happy, healthy, and whole people when we embrace our differences and provide the supports each person needs. Today, Dana owns her own acupuncture clinic where she focuses on the wholistic health of all of her patients, regardless of ability or income.

14 COMMENTS

  1. Wow Dana, WONDERFUL blog
    and thank you for taking the time to write it.
    It is a very caring piece and even though
    our views and understandings are age and experiences dependent,
    I DO hope that a young person reads this, or perhaps their parents
    and receives some understanding, validation from it.
    I think this article would do well to be linked on MIA’s “education for parents”
    and possibly you could send it into different websites.
    It far surpasses anything a teen, parent, teacher, will ever hear from the
    “systems” and is much more valuable.
    We really should never have to feel “what is wrong with me”.

    Very freeing piece. A piece of strength and independence.
    Let’s remember that psychiatry, psychiatrists themselves that own
    the diagnostics, are not near as free. Perhaps? Perhaps you are the one that is free?
    We wonder who has disability? If we measure it against a normal?
    I get it though, I know the pitfalls. But I really love the
    way you expressed it here.
    Thanks for taking the time to write.

  2. Fabulous blog Dana, it shows you as a confident capable person assured in their identity. Personally we ought to get support because we ask for it (most people are in that situation) or in extremis after a needs assessment. Supportive relationships and resources should not depend on adopting a pejorative label. All my diagnosis have been unnecessary, even in their own terms, usually very stigmatising and excuses to prescribe. Like many people in the psychiatric system the labeling has been the occasion for the denial of support not its introduction. But having said this you are quite right to show how we can work with the system the way it is and sometimes gain strength even from a woefully inadequate system of care.

    • Agreed Whatuser,
      It is difficult enough to ask for support and who are the labels for? All the people who make a buck out of trying or pretending to make someone “fit” the mold of normal.
      And yes there is indeed such a mold, we can tell by the millions of kids now failing that norm.
      Actually that norm is not even as narrow as they pretend. This has been designed for people to fail. It is huge business.

  3. So much “mental illness” and “learning disability” originates from dysfunctional schools. Dana, fortunately, was not thrown *too* far down the psychiatry/behavioral health #shithole . But, her schools forced her to “learn how to do school” through trial and error, which wasted years of her time; they withheld support whenever she questioned her “diagnoses”; and they held her self-worth hostage to teachers who sometimes excluded her from “mainstream” or “advanced placement” classes, despite her ability to complete those classes. This trajectory of manufactured “failure” could have wiped Dana’s life out. Her strength and determination were instrumental in salvaging most of her future. She should be very proud of herself and never lose sight of her capacity for self-protection and growth.

  4. This is the problem many of us who subscribe to this website have. We were probably never legitimately “disabled.” For whatever reason, we were led to believe that what was inherently unique about us needed help in some way to be righted or maybe we were just going through one of life’s many naturally normal crises. And, there are those who have experienced trauma through war, abuse or other incidents. etc. Then, we received a diagnosis, however flimsy, were drugged and subjected to therapy and other nonsense activities that insulted not only intelligence, but our very humanity. And, finally, after all, that, the subsequent brain injuries and actual trauma of what happened to us has made us part of the disabled class. Thank you.

  5. For people who have psychological or neurological type conditions (or whatever the person themselves calls it, labels at the end of the day are more descriptive than scientific) it can feel very overwhelming growing up and eventually becoming an adult. When I was 18 and started to question my autism and depression diagnosis (diagnoses?), it seemed to become about more than just me. There were the mainstream mental health folks who said I should take pills and do CBT, who told me I should be a “good depression patient” and “acknowledge and take responsibility for my disease” there were the natural health folks of all kinds, who suggested everything from veganism to putting butter in my coffee to large doses of vitamin b12 to fecal transplants (don’t google that if you’re eating your breakfast!)
    There were also the crowd who say it’s all in my head and all I needed was to go for a run, sleep for eight hours and stop eating cake, all of which I already have been doing for the last 20 years! (Mum raised me to be fit and active, so I was already well used to very little junk food and strict bedtimes anyway!) I don’t know if there’s an objective diagnostic criteria for fat lazy slob syndrome, but why the hell they think all depressed people are those things is beyond me! All these different people made me feel ashamed and judged, like maybe it is my fault, if I stopped eating tofu and started running ultra marathons instead of the regular kind and popped the damn SSRIs like candy then maybe I’ll finally be a good little patient and make all the doctors and naturopaths and even the Karens very happy and I’ll wonder why I ever bothered to go to all the trouble of faking being a very sad misfit. I get that the discourse around illness and faking it is complicated. But why do we need to go on witch hunts and force people to spend years trying all these different treatments just to prove they are “a real disabled person” or “traumatised enough” or “disabled enough” How can I possibly know when I’ve isolated every possible origin of my distress? Does life and identity need to be a court case? I know it’s possible I could have rare, hidden allergies I don’t know about. I know I haven’t tried EMDR or DBT or Gestalt therapy. What I do know is that I am human, and that if I had stable housing and a job that didn’t make me suicidal, I would feel a lot better, and could be in the world in a much happier state. Whether that is enough, whether I am “enough” is a question which may forever perplex me.

    • If the only messages we get is that brains are broken, that we should be this or that, or feel this or that, it can become pretty internalized. Some folks don’t feel shame from messages that they don’t measure up. But many do. We can easily internalize these and form comparisons of what we are told “mental health” or success is. Yes it’s easy to start ruminating around other people’s messaging or advice. It’s called not having a boundary of listening to shit talk. Because the shit talk works perfectly with how badly we feel already. It reinforces it often. It often comes disguised as help. Some really DO want to help, but mostly it does not cost much.

      A bit like being told you are never good enough for heaven, and of course then we feel guilty when we have “bad thoughts” and we think that we definitely will not go to heaven, and yet we can’t help our thoughts. So the issue really was the message, not the “bad thoughts”.

      I know feeling as if we are in shit jobs might be because we are, and it also might be because we were told we had a “thing” and we felt that “thing” would prevent us from getting the things that we knew we couldn’t get under the conditions of the “thing” of the brain.
      Our world is not set up to make everyone happy in their jobs. And certainly not set up that we all get lots, and it’s NOT for lack of trying.
      One in four people in Brazil lives below poverty line. 3 million are homeless in the phillipines. MANY children have no home and sleep on streets.

      Doesn’t do you much good to know this. But dammit, instead of listening to all the advertising when you spill your soul, perhaps realize that life is not some kind of “fairness”. Most of us are stupid and have no clue what to say, or how to say it. I think we are just lucky to escape some of the offerings that exist.

  6. How come there is not more discussion on the role Voc Rehab role in our skewed recovery? For if one becomes labelled, the ability to mask one’s behavior that still can surface, can be a challenge to guide. And if one can not become familiar with how to monetize or be monetized, then to stand for what is ethical may costs a great deal (like a career, a marriage, a role by which social justice becomes a fringe item, when a greater agitator is needed for the content of the emergence of character.

    • I can easily discuss Vocational Rehab. Twice, they sent me in to the “rabbit hole” of the “mental illness system.” They analyzed me with their psychologists, sent me to their medical doctors for evaluation. They referred me to the “mental illness industry” who prescribed me the drugs. They forced me into a day facility where I was paid pittance as allegedly compared to the “able-bodied.” They gave me some useless award and then the next day when I didn’t act like they wanted me to act; they kicked me out and could not care less if I had any income or what I would do with my time after they had stolen it for a few years. In my experience and opinion, Vocational Rehabilitation is just another “joke” in the “mental illness industry.” I should note that at that day facility there was those sent there with allegedly “physical ills and disabilities.” And, there was group of developmentally disabled at the same facility, also. Thank you.

  7. Before I write anything, I’d like for people to watch this scene from a TV show called The Fresh Prince of Bel-Air. It’s a small 1m 41s clip (In case, if anyone comes back to this article in the future and the video gets taken down on YouTube, it’s from Episode 2 of Season 2).

    Some background to this scene. Uncle Phil (the tall, heavily built, bald man) is one of the main characters of the show. He is a lawyer. Uncle Phil’s daughter Ashley gets bullied at school by the daughter of a psychiatrist. But the psychiatrist’s daughter lies to her parents that it’s Ashley doing the bullying and she falsely acts innocent.

    So, Uncle Phil and his wife Vivian, and the psychiatrist and his wife, confront each other to talk about their kids.

    Even though the show is a generally a comedy, this scene actually throws some very good light on what the reality of psychiatric labels are. Unfortunately, in real life, you mostly cannot do to psychiatric labellers what Uncle Phil did there at the end, no matter how much grief they cause you.

    I have fortunately never been labelled with the junk labels I’m about to mention. Yes, I have to state that explicitly, because that’s how badly damaging they can be to a human being and I’m terrified of them. But I’ve clearly noticed how they are used by people. I have seen it on forums, chatrooms etc. Basically as tools to gaslight or to get something out of labelling someone else that way.

    How could a person being labelled with things like “borderline personality disorder” or “narcissistic personality disorder” be served by those labels?

    Also, when does, for example, “borderline personality disorder” end? Does it end like how pain during urinating ends when a kidney stone is surgically removed? Or does it end like how a fever or cough ends after the pathogen has been obliterated?

    In reality, it’s always there. It’s talked of as a “long-term illness” with “no cure” and that “genes are thought to play a role”. Always ready to be used by someone to keep someone else in check. If not a psychiatrist, then by a family member who knows about the label, or a co-worker or even your goddamned spouse.

    It’s horrible that in many countries psychiatric labelling is what insurance companies and welfare systems demand in return for financial rewards or help.

    The only way you could escape that is by using cash payments, which for people who are already suffering in some way, is mostly a no-go.

  8. “.. Just about every Disabled person I know has encountered imposter syndrome at one point in their life…”

    On my own introduction to psychiatry, I believed in problems a professional might help someone with, but I didn’t believe in Diagnoses, especially when most of the “patients” looked okay.

    Further down the line when I tried to withdraw from Neuroleptics and was getting into serious trouble – I found myself believing in Diagnosis. But then I found effective non chemical solutions that worked for (non existent) “Schizophrenia”:-

    Neuroleptic Withdrawal Syndrome has also been described as a type of Chemically Induced PTSD Syndrome.

    When I was is in the Grips of this Chemically Induced PTSD I realised that it was important for me to experience this Horror as a physical condition. Because once this happened IT weakened – and I eventually came back to normal.

LEAVE A REPLY