When the only thing "wrong" with you is that you were diagnosed with the wrong thing.

Imagine having problems breathing as a teen. You see a doctor, you’re diagnosed with asthma, you’re given an Advair prescription and an inhaler and you’re good to go. Or, you’re supposed to be. 

But imagine that the inhaler doesn’t work. Imagine that you still have trouble breathing, even when you use it as directed. You share your concerns with your doctor and they change your medication to Symbicort, then Albuterol, then Dulera. Over time, you start having to seek help for other problems, too – migraines, insomnia, memory loss, excessive fatigue. You’re easily irritable, so they think you might have a mood disorder; you have concentration issues, so they say you have ADHD. Neither Tylenol nor Ibuprofen helps the headaches; Melatonin, Ambien, Lunesta, Sonata won’t give you the rest you need. You’re advised to decrease stress, to change your diet, to cut caffeine. You take all the pills you’re given, as prescribed, and you continue to use your inhaler every day. But you still suffer. You still find yourself in multiple moments each day fighting to take in air. You’re doing everything you’re supposed to be doing, and almost every known intervention has been tried, but one of the most natural human functions – breathing – remains something you struggle to achieve. Eventually, it’s determined that your case is just "difficult" because your condition is resistant to treatment, and there’s not much that can be done but make your symptoms just a "little bit less rough". 

Fast forward a decade or so. Imagine you see a new medical provider, and this provider suspects there’s something fishy about your “Asthma”. “If you had Asthma,” they tell you, “you’d probably also have issues with chest pain, coughing, wheezing. These things don’t seem to be a problem for you.” The provider does an in-depth evaluation and says your symptoms, in comparison to your diagnosis, don’t completely match up. 

Imagine you receive a revelation... one day, after getting better acquainted with this new physician, you’re informed that you don’t really have Asthma. You never did.

Imagine being told you have Sleep Apnea instead. Central Sleep Apnea; unlike Obstructive Sleep Apnea; is not a respiratory condition, but rather a malfunction involving your brain’s inability to send signals to your diaphragm telling it to breathe. Imagine learning that the reason you struggle so much taking in air during the day is because you have a high level of carbon dioxide in your blood; that, the reason you have trouble breathing, period, has nothing to do with your airway or lungs, but everything to do with your brain not sending messages the way it should. The reason you’re tired, the reason you’re irritable, the reason your focus and concentration are gone… the memory loss, the headaches… 

Imagine learning they’re all connected. 

What if all of your symptoms and your reasons for different treatments were caused, not by various different conditions but, rather, primarily, by just one thing? One thing that was never considered; one thing that went unrecognized for years until now? And what if all the advice you’d ever been given, all the medications you’d ever been prescribed, all the healthcare regimens you’d ever endured had been ineffective, not because your body was being difficult, but because you were being treated for a condition you never had?

See, to find the solution to any problem, you must first know what the true cause of that problem is. 

You can’t treat Sleep Apnea with an inhaler. Especially Central Sleep Apnea. No… to treat Central Sleep Apnea, you need to address the underlying cause of your brain’s inability to signal the diaphragm; and, in the meantime, you need to wear a CPAP machine at night. Without these things, all other attempts at healing your struggles will fail.

---

Now, try repeating this story; but replace some of the words with other words instead. 

Let’s say the basic human capability of yours that is impaired isn’t breathing; it's the ability to function within society and adequately understand and relate to the world around you. 

Let’s say you were diagnosed with Bipolar Disorder at 14, and then at 17 Borderline Personality Disorder was added to your chart because you struggled with mood dysregulation/emotional instability, suicidal tendencies, "reckless behavior" and self-harm. Over the years, you’re treated for social and generalized anxiety, for major depression, for mania, for personality defects. You’re given medication after medication after medication and placed in more types and numbers of treatment programs than you can count. You’re recycled through inpatient facilities and outpatient services and experimented on with multiple different kinds of therapy that never seem to work. CBT. DBT. CST. ACT Team. PSR. The list goes on. 

But nothing ever works. Your doctors and other providers try everything they can think of, but nothing helps. You do everything you’re told, and yet you’re never better off than you were before. You swallow pills and go to appointments and complete various challenges and tasks; you comply with your treatment, and yet you’re still going to the emergency room. You’re still being admitted to the hospital again and again. You repeatedly fall into the same sickly cycles and remain stuck in the same traps. 

See, it’s frustrating because no FDA approved drug will keep you from relapsing again like before. It's tiring because not a single evidence-based therapy has seemed to have the effect on you that it should. And it’s exhausting because no matter how many times you talk to a clinician, or have your mind challenged and mind picked apart, you’re still wasting huge chunks of your life away in medical settings.

You’re made to believe that you’re difficult, that you’re high-maintenance, that you are extremely resistant to treatment and will always be chronically unwell. 

---

At 17, in a place called Holly Hill Hospital in Raleigh, North Carolina - as a very depressed teenager with cuts on her arms and a history of "meltdowns" and "erratic behavior"; as an 11th grade drop out who failed to cope in public high school and who couldn't stay out of the system - I was given a diagnosis of Borderline Personality Disorder. 

That label followed me for over 10 years.

That label also gave me hell for over 10 years. Because medical records, especially in psychiatry, are sometimes treated as Bibles; because they get passed down from place to place to provider to provider, often without questioning or doubt or concern. Because, that one doctor that one time that one year said this patient has this diagnosis - they must be right, right? Doesn't matter that it was a long time ago. Doesn't matter that it was before the patient had even turned 18. Why question when the symptoms seem to match well enough?

Except, for me, they didn't match well enough.

At 28, I was switched to a new therapist because my previous therapist said she couldn't help me anymore. Due to an ordered higher level of care, I was bumped up to one who could see me 3 days a week. After a month of tri-weekly sessions, this new therapist said she didn't agree with one of my diagnoses. 

"Who diagnosed you with BPD?" she asked me.

"I can't remember," I said. "That was years ago, when I was a teen. I only remember the name of the hospital I was in. But I've had the diagnosis for 11 years."

"And no one has ever challenged that since?" she asked. 

"...no," I replied. "It's what I've mostly been treated for the last decade."

---

"You don't have Borderline Personality Disorder," she told me one day. "You do not meet criteria for a personality disorder at all." 

She said that, while some of my symptoms mimicked BPD, none of them actually matched up, and the underlying reasons behind symptoms that were mandatory for a BPD diagnosis were not applicable for me. For instance - while self-harm and suicidal behavior is a symptom of Borderline Personality Disorder, in order to meet criteria for BPD an individual has to be self-harming or making suicidal gestures in an attempt to manipulate other people. I was told for the first time in my life that a requirement for my "diagnosis" was to hurt yourself as a way to keep others from abandoning you, or as "guilt trips" to keep them by your side - that there had to be malicious intent. That was not the case for me. When I self-harmed, I did it out of self-hatred and disgust; it was usually an attempt to punish myself, and I usually went to extremes to try to hide the scars. My new therapist said that fact alone disqualified me from a diagnosis of BPD.

Also, all other symptoms I had that had given me the BPD diagnosis could be explained by other things.

She did an assessment with me - a really long one, with a long list of questions and an in-depth analysis of both my present symptoms and my past; digging as far back as my childhood, as far back as ages 6, 7, 8. 

"As a kid, did you ever play with other kids? Were you the kind of child who interacted with others on a playground, or did you mostly keep to yourself?"

"I kept to myself."

"Did you have any problems with mood as a young kid? Before adolescence, when you were little - did you ever have difficulty regulating your emotions?"

"Yeah... I remember my mom always talked about taking me to a doctor and having me put on medicine when I was like 7-9 years old."

"Did you/do you ever tend to become very focused on specific things, or become so hyper-focused on things that you tune out of everything else?"

"Yes."

"Do you ever get so engaged or excited about topics that you begin to talk really fast and really loud, and continue talking even after others get the point?"

"Yes."

"Do you often have trouble with nonverbal communication, body language, and cues?"

"Yes."

"Do you find yourself observing and mimicking others in social situations because you're not sure how to act?"

"Yes."

"Do you ever find yourself pausing to think before saying something because you're trying to process how to say it?"

"Yes."

"What about eye contact? I noticed you don't make eye contact with me."

"I never do."

---

It was after over 10 years of failed treatment that I finally learned a huge part of what was really wrong with me. 

At the age of 28, I heard these words from a licensed clinician who had seen me more in a few week's time than others had in a span of months:

"You have ASD."

ASD. Autism Spectrum Disorder. 

Far into my late-20s, I learned something that was a huge revelation for me; something that simultaneously blew my mind, gave me peace, gave me hope and validation, and changed my life as I knew it forever. 

Everything about me. All of my quirks, all of my traits, all of my passions and problems - all of the symptoms I had, almost all of the things I'd suffered with; all the little facts about me that I used to think just made me "awkward" or "different" or "weird" - all of them could be explained by one thing. 

While my mood problems could definitely be a result of Bipolar Disorder, I learned that mood dysregulation was also a symptom of ASD. What was previously assumed to be just panic attacks - the meltdowns in crowded stores, the inability to tolerate all the noises and sounds and commotion at once - the sensitivity to every footstep, to every cart pushed, to every laugh, to every cough and sneeze and bang and click and beeping sound of the checkout machines. It was never just simple anxiety. It was sensory sensitivity - part of ASD.

The difficulty connecting with others, the tendency to space out or "daydream", the confusion in social situations, the uncertainty about how to behave or what to say, the inability to read people's faces or distinguish "hidden" messages in their bodies or voices, the difficulty reading between the lines, the frustration when I'm talking fast and family tells me to lower my voice because apparently, I'm talking "too loud". The hatred of large parties. The lack of desire for relationships, intimacy or physical touch. The avoidance of certain textures and sensations. The occasional losses of temper. The overwhelming need for predictability. The tendency to fall into crisis without structure or routine. 

All of these things were Autism. 

The "reckless behavior", the disrupted moods, the "lack of boundaries" (which was actually a lack of the ability to pick up on insinuations and cues, hence a need for people to be blunt), the self-harm, the suicidal behavior, the dissociation, the frequent hospitalizations... all of those symptoms of mine could be explained by either ASD, Bipolar Disorder or PTSD. But none of them could be explained by Borderline. 

I spent half of my life in hospitals, emergency rooms, clinics, doctors appointments, counseling sessions, group homes, nursing facilities, treatment centers, and even a state institution. 

I lost half of my life to countless treatments and interventions that never seemed to even make a dent in my mental health. 

I spent half of my life believing that I was too sick, too difficult, too far-gone to ever get better. 

I wasted so much time thinking something was wrong with me, when in reality what was wrong was the label that had followed me all those years.

The reason none of the hundreds of treatments and interventions that were being given to me were working had nothing to do with my strength or my willingness or my stability or my ability to improve. It had everything to do with the fact that, for half of my life, I was being treated for something I never had. 

You can't treat a neurological condition the same as a respiratory condition.

Just like you can't treat a developmental disorder the same way as a personality one. 

It turns out I'm nowhere near the first, nor will I be the last to have ASD go unrecognized for years and be misdiagnosed as something else. Apparently, it's actually very common for Autism; especially in girls; to be overlooked and mistaken for other things. But having it addressed has done wonders for me and my health in ways that I can't even begin to explain with words.

Ever since seeing the new therapist, who has been communicating with me and treating me as if I have ASD traits as opposed to BPD, I have gotten better and to a healthier position than I can ever remember being; and multiple other people have told me that I have shown more improvement in the past few months than I have in the past few years.

---

My name is Bethany. And, while I think I always knew it somehow inside, I have finally, formally been given the answer that actually accurately explains me as a person - the answer that has finally helped me fully understand myself and my present and my past. 

Improper diagnosis made me believe that there was something wrong with me.

Proper diagnosis showed me that nothing is. 

I have Autism Spectrum Disorder. And it's part of who I am.