Years of Misdiagnosing Adult ADHD: One Woman’s Story

misdiagnosing Adult ADHD

What happens when a parent seeks to spare a child the ADHD “label”—but unwittingly sets up the child for lifelong struggle and even years of misdiagnosing Adult ADHD as something else?  I’ve heard many variations on this story.  In this post, I share a guest essay on this topic.

Keep in mind:  It is often far easier to accurately diagnose ADHD in childhood, especially because it is one of the most common psychiatric diagnoses in children.

By adulthood, all bets are off. Long unrecognized ADHD and its fallout can be mistaken for whatever is the specialty of the clinician in front of you. That leads to misdiagnosing adult ADHD as depression, anxiety, Substance Abuse Disorder, all manner of personality disorders, and even low intelligence.

First, Some Background

Being diagnosed with ADHD later in life typically brings mixed emotions. You’re glad to finally have an explanation. At the same time, you might regret the years of frustration, not knowing exactly what you were up against. You might think about what could have been.

Late diagnosis becomes all the more heartbreaking when you’ve tried to seek professional help—often multiples times—only to be misdiagnosed and, moreover, treated with medications that only made things worse. (See Misdiagnosed with Depression until Age 39: Best Week of My Life!)

Perhaps the most heartbreaking stories I hear come from adults whose parents refused to have them evaluated or treated for ADHD in childhood. Resentment can ensnare the relationship. What about when a parent still refuses to acknowledge ADHD, perhaps including their own? That can be especially upsetting and alienating.

These stories motivate me to educate parents who right now are afraid of “labeling” their children with ADHD.

These parents’ fears are understandable. It is not always easy to find competent mental healthcare. But with education and self-advocacy, parents have more control. (See One Man’s Story of Late-Diagnosis ADHD Touches This Mom)

ADHD Partner Survey respondents shared their reactions to a mate’s late diagnosis here: I wish I’d known earlier about ADHD.

In response, a reader named Heather shared her story in the comments. Heather agreed to my reprinting it for ADHD Roller Coaster readers. I hope it helps parents think through the decision.

 

—Gina Pera

Years of Struggle—and Misdiagnosing ADHD

I struggled with ADHD as a small child, most memorably when I was in third grade.  I was taking a state test and by the second page, I became bored and uninterested. So, I decided to pencil in a flower instead of taking the test.  As a result, my test results showed that I was borderline retarded.

The school placed me for a while in a classroom with mentally challenged kids.  The teacher must have noticed that I was clearly not borderline retarded. She and my mom fought to place me back in regular classrooms, where I still struggled.

I could not sit down long enough to concentrate so I was pretty much a class clown. It became obvious: Teachers were fed up with me.  I struggled throughout my school years,  making bad grades all along the way. But back then my mom could sign something to pass me to the next grade.

I Felt Stupid; Teachers Were Fed Up

I began to feel stupid because I could not sit down long enough to do the work. After receiving so many F’s, I began to not care anymore.  I continued to disrupt my classmates while they were working because I was bored.  In sixth grade, I was even suspended due to me talking all the time.

Still, my mother refused to test me for ADHD. I did not, however, know that at the time.

In seventh grade, I finally was tested but only for qualifying for smaller classes. This helped me some; at least  I was now able to complete the work.  Still, I barely made it to graduation. The only way I graduated high school was because I was in Learning Disabled classes.

College: Diagnosis But Wrong Medication

Next came college:

  • Struggling again with my basic courses.
  • Being unable to it down to study
  • Trouble paying attention in class and taking notes
  • Failing again

At that point, my mother informed me that she felt I had ADHD.  She said that, all through my school years, my teachers would bug her about having me tested. For some reason, she had refused.

When I pursued an evaluation, I received the diagnosis. Furthermore, I was told my attention span was 2 minutes.

I took a stimulant for a short time but then was switched to a medication called Cylert.  My therapist said Cylert was a drug more for adults with ADHD. [Note: Cylert was always a fringe treatment for ADHD, though some people did well on it. It was finally removed by the FDA for concerns about liver damage: ADHD Drug Cylert Discontinued]

I tried Cylert and stayed on it for about three years.  But it was not helping me as the stimulant did. I asked the doctor to change me back to my stimulant. He refused. As I continued to struggle while taking this medication, I decided to stop it and just struggle without the added burden of side effects.  Despite trying natural remedies, changed in diet, and exercising more, I still struggled.

What was the nature of my challenges?   To name a few issues:

  • Anger
  • Road rage
  • Could not focus
  • Easily frustrated
  • Losing control of my temper
  • Trouble sleeping
  • Could not sit still
  • Interrupted people in conversations

Dropped Out of College: More Misdiagnoses

Finally, I dropped out of college and started work full-time at a bar.  Working was the only thing that seemed I was good at.  I worked at night because I could never sleep at night anyway.  l liked to be moving around all the time.  Still, I struggled with my ADHD symptoms.

Finally, I asked my family physician for help. But the only thing he knew to do was prescribe antidepressants.  I would go on a long journey with a variety of antidepressants. They did not help me at all.  In fact, some of them even made me act a little crazy. [Note: Antidepressants are not considered first or even second-line medications for ADHD. In fact, they can actually intensify ADHD symptoms.]

Next, the family physician referred me to a mental health clinic that treated people with mental illness and ADHD.  I told the nurse practitioner there of my previous ADHD diagnosis.  She stated that ADHD in adults is watered down bipolar.  She diagnosed me with depression and bipolar disorder.  Again, I was prescribed antidepressants. They only camouflaged my ADHD for a while before they came back full force.

A few years before this,  I’d gone back to a college that had an accelerated program for working adults.  I graduated and began to work as a case manager.

Finally: Full Circle And Correct Medication

My supervisor, who is a licensed therapist, came to me about getting tested for adult ADD.  I explained how   I’d gone to a clinic that specialized in treating people with ADHD but the nurse practitioner only gave me antidepressants.  My supervisor encouraged me to get re-tested so I could benefit from the right medication.

I got tested for ADHD and was diagnosed. Again.  Finally, I was prescribed a stimulant again. I talked to the therapist about my journey with  ADHD and how I always tried to use natural remedies or exercise.  They just did not help me.  She explained how my brain moves at a slower pace. Taking a stimulant made my brain move at a normal pace.

Before medication, I felt I could only use a small portion of my brain. Now I feel that I can use all of my brain.  Here are the things I can do now:

  • Sleep better
  • Be less easily frustrated and control my anger
  • Stand in long lines without getting upset or frustrated
  • Drive with much less road rage
  • Sit and listen to someone speak without interrupting them

ADHD is a real illness and I have struggled with this illness half my life. I only wish my mother would have agreed to test me sooner so I could have been treated and not suffer for so long.

—Heather

Thank you, Heather, for sharing your story of perseverance. 

Can you relate to Heather’s experience? Please share a comment.
Gina Pera

11 thoughts on “Years of Misdiagnosing Adult ADHD: One Woman’s Story”

  1. M. Virginia Leslie

    I wasn’t diagnosed with ADHD until my late 40’s, when going through menopause seems to have aggravated my symptoms, but I was a child in the 60’s and early 70’s, when most people didn’t think that girls get ADHD. Getting that diagnosis was a relief, since I finally knew why many things in my life had always been a struggle. As a child part of me understood that I was very bright, but other parts of me thought that I was dense, since I seemed to have so much trouble with school and with relating to other children.

    I managed to make it all the way through college, but after dropping out of my first school, moving to another state, trying again (thank heavens for UC Santa Cruz!), and turning in my senior thesis 1/2 hour after the final deadline, after having taken an extension on it. I also thank heavens that my advisor was willing to accept it after the final deadline.

    As an adult I have always been an underachiever. I have always lacked confidence in myself, and I have always been slow to learn new information, though once I learn something I’m very good at it. I don’t handle pressure well so I have tended to end up in jobs that aren’t that challenging. After trying several different jobs, including working as a computer operator/secretary for a tech company for several years I ended up laid off.

    While I looked for a new job I did some temp work, including as an executive secretary for a laser manufacturing company. While I was working there I was offered both that job and a job with the San Jose Public Library. The executive secretary job paid $2 an hour more than the library job, but after two month of doing the work I was already bored, and I knew that would cause problems for me down the line, so I took the library job. Besides, I had worked my way through UCSC as a student worker at the library, and knew I liked the work.

    I ended up working for the library system for 30 years. There were many things about the job that were ADHD friendly, but also some things that were not so ADHD friendly. Invariably I would end up aggravating my supervisor, though some were nicer about it than others. Some of them, I think, appreciated the things I was good at enough to cut me some slack in other areas. Before my diagnosis I couldn’t figure out why certain types of tasks, for example things that required keeping track of how much time things took, were so hard for me. Once I was diagnosed it all made perfect sense, though it didn’t mean I didn’t have trouble anymore.

    By the time I retired I was working for a boss that really appreciated me, at a branch I really liked, and yet even so I still had trouble performing consistently, even though I wanted to very much. This fact caused me much stress. I also could never stay awake in meetings unless I was actively involved in what was going on. If I was just sitting and trying to listen while someone presented something I would invariably fall asleep. It became sort of a joke with my coworkers. Once I fell asleep while standing up, since the presentation was on a computer screen, and we were all standing around the person showing us how to use a new program. She was soooo mad!

    I have been enjoying retirement, though I’m still not good at being consistently productive, which causes me some stress, but at least I don’t have to deal with the stress of the job and the commute anymore. I have found a great group for Adults with ADHD through Kaiser, and the lessons being taught there are helping.

    Life is still a struggle at times, in part due to my ADHD, but understanding what is going on in my brain helps me cope, as well as all the excellent information out there for those of us with ADHD, both articles and books. Do I regret that I was not diagnosed as a child?

    Of course, but leaning that there was an explanation for the struggles I experienced was just so wonderful, and knowing that girls didn’t tend to get diagnosed during the time I was growing up has, in a way, helped me to accept not having gotten diagnosed earlier in my life.

    1. Dear Virginia,

      I greatly appreciate your sharing your story. I bet it will resonate for readers traveling behind you on this path.

      Isn’t it interesting that I’ve known several women with ADHD who were librarians? I’ve also known several people with ADHD, men and women, who were accountants/CPAs.

      Some might say neither is a job for people with ADHD. But not everybody can be–or wants to be– an EMT or a firefighter! 🙂

      I just can’t imagine wanting to stay awake during a meeting/presentation, knowing that I’d be the butt of another joke if I didn’t, and still not being able to. And not knowing why. “Boredom” would be the easy answer, but it’s just not the full answer.

      You’ve reconciled the past in an admirably philosophical way. And yes, you certainly weren’t and aren’t alone.

      thank you,
      g

    2. Heather, what a powerful story – all the more reason to keep working on more accurate screenings, diagnoses etc., of young girls for ADHD. This topic in fact, is my thesis project. Far too many girls have struggled with this for too long alone and unsupported.

      Gina, thank you for posting this – and for your continuing work to support those with adult ADHD!❤

  2. Maria A Pugliese

    I greatly admire Heather’s persistence and her getting to the place she is now despite all her challenges. Her story is a classic one.

    There is one part a statement by her therapist that is incorrect. “She explained how my brain moves at a slower pace. Taking a stimulant made my brain move at a normal pace.”

    Whether or not an ADHDer is hypoactive or hyperactive physically, one thing is the same: Their brains are hyperactive and stimulants slow them down so that they can make connections and complete projects. It is a paradoxical effect that does not happen in non-ADHDers.

    My opinion is based on 45 years of treating ADHDers which also included my mother, my husband and my two adopted children. Congrats to Heather and everyone like her. Maria Pugliese Hieble, MD

    1. Dear Dr. Pugliese,

      Thanks so much for weighing in.

      Yes, I noticed that and thought, well, if it makes more sense to some people.

      But you’re right….facts is facts.

      I hope you are well.
      g

  3. I could probably write a book about my life if I could sit still long enough.

    Just imagine being diagnosed at age 67 after nearly 40 years of counseling and antidepressants.

    So many huge mistakes with my children. So many jobs lost. So much conflict with my siblings. Many other things too numerous to list.

    Finally, when it was too late to correct anything, I find out why my life has been a disaster and why I didn’t amount to much. I had nothing to show for my life. I had no legacy.

    Two years later, I’m trying to restore my relationships with my children. It’s too late for a career. I retired nine years ago – because no one would hire me. As I work to build a life with meaning, I’m learning the piano. I hope to have a legacy of music by which I will be remembered.

    1. Dear Katharine,

      Yes, I can imagine being diagnosed “at age 67 after nearly 40 years of counseling and antidepressants.” It’s why I do this work, because I find that horrifying and inexcusable.

      And I’m so sorry that happened to you.

      I hope you enjoy learning to play the piano.

      Maybe your legacy will also include your decades of trying to help yourself and continuing until you found an answer — and courageously accepted it.

      Not everyone would, you know.

      best to you,
      g

  4. Hello Gina – Certainly no fault of the writer, but stories like this one arouses an anger that is always in me, dozing just below the surface.
    My extraordinary child is now 20, which makes her technically an adult.

    You had once suggested to me that, when she became an adult, she might override her mother and pursue medication. But she is also autistic, and really does not have the agency that one might hope for in a child crossing over into adulthood.

    Plus, she has been thoroughly indoctrinated to be suspicious and dismissive of all forms of therapy, medical or otherwise.
    So much of the writer’s s narrative is similar to hers, especially regarding her educational history. My child also received the piece of paper that says high school diploma. The rage I feel toward public school ‘educators’ will never fully subside.

    I mansplained to them when she was in elementary school that her best chance was to try medication. Several teachers agreed w/me, but, unlike the ‘educators’ in the writer’s story, none had the courage or integrity to confront her mother. None would back me up.
    Of course, I was only the ”Dad’, so what did I know?

    Just a quick funny/sad story. I have throw rugs in the rooms of my home. My daughter, who shuffles slightly when distracted, which is virtually all the time, walks through the rooms and ruffles each rug in turn. I, having some minor OCD issues myself, , will subsequently walk through the rooms and straighten all the rugs.

    On her next trip through she will again ruffle the rugs. And I will straighten them again. This had been going on for years. I no longer find it frustrating, and it is really only a minor manifestation of her ADD. But when I laughingly kidded her about it, she was hurt , and angry. After 20 years, I really should know better.

    Thanks for listening.

    1. Dear Ian,

      I certainly sympathize with your anger.

      When ideology outweighs the person’s long-term welfare, I find it inexcusable — and callous.

      There are many well-meaning special-ed teachers who scorn “pathologizing” their students. Many of these teachers also have the same conditions as their students, I’ve observed, which might have something to do with their “denial.” But also, probably their education inculcates these cult-like ideas.

      As far as the teachers who do go out on a limb and suggest ADHD and medication, I can understand their reluctance. In some school districts, that is illegal. And it’s something the anti-psychiatry brigade love to pounce upon — and sue. They spread the disinformation that teachers suggest this because they want to make their jobs easier — not because they are concerned for the child’s ability to focus, comprehend, delay gratification, etc..

      I understand completely about the rugs. lol Bless your heart.

      I am hoping that your daughter has a breakthrough — or you happen across a way to reach her.

      With some folks, I think the idea of taking a pill is the most frightening part. Once they swallow the pill, everything is out of their control.

      I try to find ways to maximize their feelings of control. For example, the patch Daytrana is one option for that. If they become at all uncomfortable, they know they can just take it off and in about 30 minutes (on average, sometimes longer), return to baseline.

      With liquid Quillivant, they can take one tiny drop at a time.

      take care and thanks for writing.
      g

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