Girl studying.

My One Regret as an Adult Diagnosed With ADHD and Autism

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I stumbled across the following question on a site I regularly contribute to:

“What are the biggest regrets a person with ADD/ADHD has?”

I like the way my answer turned out, so I’d like to share it with you.

My only real regret is that I didn’t start receiving help earlier. But I have faith that everything happens for a reason, and if that means not getting a diagnosis until I was 25, well, then that was exactly when it was meant to happen.

I often wonder what life would have been like had I been diagnosed in, say, preschool when my traits first became obvious. I’m also diagnosed with autism (of the type formerly known as Asperger’s), OCD and anxiety. The latter two diagnoses also came at 25, and I didn’t get the autism one until I was 31.

Although I endured some struggles, I managed to come out pretty successful. I have a Bachelor’s in Social Work and three jobs in human services. I don’t yet live on my own, however it doesn’t bother me that I’m not yet ready. One thing at a time. Besides, it just gives me more time to work, make money, and take life at my own pace.

Had I been diagnosed earlier, where would that leave me? Sure, I may have had an easier time with things, and known more about myself earlier on, but what if I just became another statistic? Another kid thrown into the special education system which is still in need of great reform today?

I was in all regular classes, and demonstrated that I could handle them, given there were no diagnoses yet in sight. Had I been slapped with labels from the get go, perhaps my abilities would have been overshadowed by them. I don’t like to look at my diagnoses as “labels,” but rather “titles,” as they have given me many answers about myself. However, in some cases, they are seen as only labels and people look for what they limit, rather than enable, in a person.

I’ve seen friends go through the special education system, friends who have outstanding levels of intellect and could easily have gotten a degree. However, they were set back because they were not awarded the same diploma as their peers. I feel the system has failed them.

If I have any regrets, this may be the only one, but at the same time, I feel very fortunate to have gotten as far as I have. And I can use that combined with what I now know about myself to help others in similar situations.

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When People Treat ADHD/ADD as a Joke

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I was diagnosed with ADD when I was in first grade. I still remember sitting in my classroom trying to keep up with the activity we were doing. Everyone else was on the fifth question, and I hadn’t even finished the first. I got so frustrated I yelled “Stop! I can’t keep up!” and broke into tears right then and there. I’d also break down crying trying to do my homework. (I still do to this day.) That’s when my mom took me to the doctor, where I was diagnosed and put on medication.

The diagnosis was hard on all of us, and my parents deciding to give me medication was even harder on them. It hasn’t been easy living with myself, and my family, although they love me, found it hard at times to deal with me. Tasks that take most people minutes to complete will take me hours. I have to invest so much mental energy into the simplest things; even doing the dishes will leave me exhausted. Some days I get so restless and uncomfortable it almost brings me to tears. The worst is trying to stay organized, remember things, and complete assignments.

This is what it’s like for me to have ADD, yet many people use it as a joke. They think of an annoying, obnoxious and hyper child and make a lot of stereotypes and jokes. Trust me, it’s not funny at all. There’s nothing funny about feeling so restless it hurts. There’s nothing funny about breaking down because you’ve been sitting at the computer for five hours and only typed out five sentences of your essay that’s due soon. There’s nothing funny about people constantly telling you how obnoxious, annoying, and irresponsible you are. There’s nothing funny about walking into a class half an hour late because you forgot when it started. There’s nothing funny about having your professor pull you aside and tell you that you’re failing the class, and you ended up writing some silly nonsense on a writing assignment you lost track of. It’s frustrating, annoying, and downright embarrassing!

I cannot tell you how many times I’ve been teased, laughed at, and yelled at because of my ADD. So the next time you hear someone cracking a joke about ADHD/ADD, just remember it’s a disability. You wouldn’t laugh at someone in a wheelchair or someone who is blind, so don’t laugh at someone with ADHD/ADD.

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What My ADHD Looks Like

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I once read, “If you’ve met one person with ADHD, then you’ve met one person with ADHD.” I think this is pretty accurate. ADHD is not a one-size-fits-all disorder, and in fact, it is pretty complex. It requires a multifaceted diagnostic approach, and its presentation can vary from person to person.

I have heard many people with ADHD say that in order to focus, they need complete silence. Background noises are too much of a distraction to concentrate. However, I am the opposite. I need background noise. When I am doing homework, or writing, even when I’m trying to fall asleep, I always have the TV on or music playing.

I’ve met people with ADHD who are chronically early for everything. This is something I can not relate to at all. If I ever somehow miraculously leave the house in time to get somewhere early, I will then inevitably forget something imperative to my journey, requiring me to turn around and go back home to get it, causing me to arrive late. Every. Single. Time.

Here are some of my personal “quirks” and life experiences that I associate with my ADHD. Maybe you’ll find that you can relate to a few of these.

I can turn anything into an analogy.

I will dive right into new projects before I research the steps required to complete them. It is not until things start getting a little tricky that I will look into the directions — and inevitably end up having to go back a few steps.

When I discover something that interests/inspires me, I become obsessed. I can spend hours on end learning everything there is to know about it and can produce grandiose ideas related to my newfound “calling.” Until I get bored. Then I’m over it.

I work well in a crisis. It’s the mundane everyday tasks I find so challenging.

I feel things very deeply. A tragic news story can consume my thoughts and emotions for days. On the other end, show me a story about human acts of kindness, strength, or perseverance, and I’m reduced to a blubbering pile of emotions with a restored faith in humanity.

I love a challenge. Tell me something is impossible, and I am immediately interested in proving you wrong. It’s as if those words are an ignition switch to my brain.

I am a problem-solver, a puzzle-decoder, an out-of-the-box thinker. Nonlinear thinking leads to nonlinear solutions.

I secretly love finding broken toys in my house because I can throw them away, and that means less clutter!

I sometimes feel like a fraud and that the bottom can drop out at any time, exposing just how fraud-y I am. I feel this way far less often than I used to. I have come to accept that I really do deserve all that I’ve worked so hard for, and when people compliment me, it’s because I really am smart/talented/special, and I’m not just fooling everyone.

When I try to describe what ADHD is like to me, I compare it to having 22 different radio stations on at once and trying to learn the lyrics to one song. Try it.

I also say it feels like my brain needs glasses. (I love me some analogies!)

I am terrible at small talk.

If I have an unstructured day but I know there is plenty I should/could be doing, I become overwhelmed and opt to just stay in bed instead. In order to avoid this, I actually have to prioritize my to-dos and write out a schedule for myself.

I’m not afraid to try something new and actually thrive on changing things up a bit regularly.

If I love something, I end up buying a ridiculous, unnecessary amount of it (makeup, phone cases, “buttery soft” leggings, picture frames, books, office organizers, etc.).

I am completely oblivious to lights being left on, clothes piling up, or hearing the home-shopping network blaring from an empty room somewhere in the house, but I cannot stand for a door to be left open in a room I’m in. If someone pops into my office while I’m deeply engaged in a writing project and they forget to close the door on their way out, I cringe. I may even yell, “Get back here and close that door!” Even just opened a crack, it sends my blood pressure up a few notches. I have no explanation for this one.

I’m pretty sure my brain is turned off until the “final hour.” My best work, strongest ideas, and most creative solutions have always been produced when it got down to the wire.

This list can go on for days, and I’ll save emotional reactivity and lack of impulse control for their own separate post. I’d love to hear some of the traits and qualities you associate with your ADHD.

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A version of this post originally appeared on Hack Rack.

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The Adderall Stigma

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My daughter turned 18 recently and I decided it was time to put the baby album together I’ve been meaning to get to for quite some time now. When I pulled out the boxes and boxes of photos and mementos, I came across some of my old report cards and yearbooks. As I went through them, I noticed a common thread woven through the words of my teachers and friends alike. Elementary school report cards had comments such as, “Jessica is very bright, I wish she would live up to her potential” and “Unfortunately, Jessica had a lot of difficulty following the classroom rules, this quarter. She simply will not stay in her seat!” A yearbook entry from a girl in my trig class read, “Jessica, you are so fun and so funny, it was great having this class with you. Two full semesters of trig, and I don’t think you’ve brought your book to class once!”

Wow! The writing has always been on the wall. For some girls and women, ADHD may present itself in ways that are not typical of the common public perception. This was not the case for me. Apart from being female, I fit the stereotypical image of what ADHD looks like, to a T. Hyperactive, impulsive, forgetful, scattered, the list goes on. Unfortunately, ADHD was not as widely understood in the 1980’s, and because my grades were always good, I don’t think anyone felt any reason to intervene, other than to tell me I really needed to get my act together.

As I got older, and my behavior shifted from being “hyper” and “antsy,” to risky and at times even reckless. I got into three car accidents within my first year behind the wheel, and was subsequently dropped from my parents insurance plan. I was very well known by the high school deans as well all of the local police officers, several of the county judges and the assistant district attorney. They were all quite fond of me, as I was incredibly charming, but I was pretty much always in some sort of trouble, the reasons varying from traffic violations, to truancy, to underage drinking. It was not that I was some troubled teen with compromised morals, it was that I was simply not able to think through my decisions to do whatever it was I pleased. (You know, that voice that tells you, “Sounds like a great time, but my desire to avoid facing misdemeanor charges far outweighs my desire to  partake in this risky behavior.” Yeah, I didn’t have one of those.)

At that point my mother knew I had ADHD, and attempted to seek treatment. Unfortunately, the doctor we met with was adamant children should not be medicated for behavior problems, and basically insinuated that my mother should do a better job of keeping me in line. And, well, you know… doctors know best.

It was not until I was 25 that I once again sought treatment for myself. I was a nurse, I worked downtown and there was a great neuropsychologist in the area that performed an extensive analysis that confirmed the obvious; I did in fact, have ADHD, and it was pretty significant. He gave me the name of a psychiatrist and I was finally prescribed a medication that would forever change my life.

It is difficult to describe what Adderall does for me. I like to say that it’s like my brain finally got glasses after years of poor vision. Unmedicated, it’s as if my brain is stuck between several radio stations and I’m getting pieces of a couple songs, a talk radio show, the Spanish station and a whole lot of static. Medicated, my brain can fine-tune to a single station, giving me clarity and focus. It has enabled me to follow through with tasks, focus on conversations I’m having, and work more strategically and fluidly. It helps me perform the tasks most people do automatically and with ease. It has made my life more manageable, which in effect benefits my children, my husband, my patients and anyone who may happen to be on the streets while I am driving.

It also happens to be one of the most widely abused prescription drug in America.

There is a stigma attached to Addreall, the medicine that has lifted me from the fog and chaos that was once my life.

Undiagnosed ADHD, is inevitably associated with a risk for decreased self-esteem and feelings of shame . All those years of hearing “why can’t you just…” or “what’s wrong with you?” along with the obvious frustration that we cause our loved ones on a fairly consistent basis; it starts to chip away at our  confidence, and we start to believe what we hear… that clearly there must be something wrong with us.

Fortunately, proper treatment has enabled me to work through all of those feelings, and I have really learned to own my ADHD. I no longer feel the need to apologize for what I can not control, and I realize I will be a life long “work-in-progress,” and I love it! Knowing that I will continue to move forward in terms of my personal development is empowering. It’s like, the best is always yet to come.

Yet… I dread the monthly refill requests. And I rarely discuss with anyone, the fact that I take Adderall.

From the receptionist at my doctors office, to the pharmacist, to the people who may happen to see the prescription bottle in my purse, there is a level of judgement by others attached to taking this medication.

A few months ago, I called my doctor’s office to get my monthly refill. The receptionist looked up my chart and saw that the last refill was less than 30 days ago. She told me I could pick it up, but it would be dated for the following day. However, there were 31 days in that month, so this would cause me to miss a day of my medication. I tried explaining this to her, but she was determined to keep my “drugs” away from me for an extra day; out of spite. When I asked to talk to the doctor, she said she’d have him call me. I am assuming, he either set her straight, or she realized that she was being a jerk, because rather than him calling me, she called me back and said my prescription was signed and dated appropriately.

That same day, I dropped off my prescription at the pharmacy and the technician told me it would probably be a few hours because they were busy. No problem. But when she saw the three wild little kids in the back seat of my car, she looked at me and dryly said, “looks like you probably need it now, don’t you?” As if it were a “fix,” my answer to the demands of suburban mommy-hood.

My own friends will ask me how I was “able to get a prescription” and for the name of my doctor, as if anyone off the street can just walk in and request some “uppers.”

Don’t get me wrong, I understand the importance of controlling highly abused medications. I am a nurse, I am quite familiar with the devastating effects of substance abuse and addiction. However, the misunderstanding of the use of this medication for its intended purposes, contributes to the skepticism of ADHD, and mental illness in general.

I am a stereotypical, text-book version of ADHD and a thoroughly informed medical professional. If am still made to feel that I am being judged for taking a medication that has helped me to manage an otherwise often debilitating condition, then imagine the difficulty it must take for an undiagnosed woman with an atypical form of ADHD, and no medical background, to make the decision to seek treatment for herself.

Its heartbreaking to imagine how many people there are, untreated and suffering because of the fear of judgement or discrimination that come along with the diagnosis and treatment of any mental health issue.

I am hoping that in writing this, I am able to contribute in some way to the dismantlement of the barriers to recovery for those suffering with undiagnosed or untreated ADHD, as well as any other structurally stigmatized conditions and  illnesses, that can and should be treated. By hiding my ADHD or being silent about my treatment, including the fact that I am medicated, I am only contributing to the obstacles presented to those in need of help.

The fact is, that millions and millions of Americans are affected by mental health conditions. It is estimated that more than half of them are not receiving proper treatment. If you feel that you may be struggling with a mental health condition of any kind, please know that you are not alone. You are far from being alone. There is help, and getting the help you need, is OK. It is more than OK… it is imperative.

Editor’s note: This piece is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before starting or stopping medication.

Follow this journey on Hack Rack.

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When You Feel Like You Have to Hide Your Real Self to Fit In

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I am in crisis again. I am old enough now to know that I can weather it, but it’s still painful and discouraging. This will be one of those almost-silent eruptions where just a small part of the messiness breaks the surface. I’ll have done something ill-advised; for a moment, I’ll have been the real me. Most people would shake the moment off and carry on, but for me it opens up a familiar vacuous hole inside that only ever partially heals.

I have ADHD, anxiety and depression. I have been in the same relationship for 13 years. I am a committed and attentive father to a son with autism spectrum disorder. I have a career that pays north of the national average.

I’ve been called “high-functioning.” Lately, I have realized that, for me, this term means “good at hiding.” I do a pretty believable version of “normal.” However maintaining the façade is always a strain, and the better I get at it, the more, well, “weird” my behaviour seems when the façade crumbles. And when it does crumble, dealing with the consequences drains my “happiness” reserves.

During my crises (whether mini or massive), I experience a genuine sense of heartbreak. I weep for the child I was, and still am, who just wants to be accepted and understood for who he really is. I feel deeply troubled that in this enlightened world, people who are not neurotypical often feel required to hide their real selves. These questions have become more prescient as I seek to raise and defend a wonderful complex boy with his own challenges. I wonder: Would I consider asking my son to hide who he really is to fit in? Not even for a moment.

One day, though, my son might face challenges something like my own. Given the tumultuous life I’ve led thus far, what advice would I give him?

The author with his son, bicycling

Firstly, I would tell him he is beautiful, brilliant and valuable, and that the world needs more people like him, not less.

Secondly, I would tell him I love and accept him unconditionally and to be courteous to people who don’t understand him, but not to waste his time with them. He will find his place in things; it might just take some time.

Thirdly, I would tell him that when we struggle, we grow. We find something that pulls us through the hard times. I’ll tell him how I met his mum and she saw who I was and loved me — and how he came along and did the same.

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How I Was Diagnosed With ADHD at 40

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I was a bright kid growing up — not as smart as my brother, a genius with a photographic memory — but I studied hard and knew how to perform well on exams and behave well in class, so I was successful academically. I wasn’t an athlete or in the popular crowd, but in academics, I found my niche. Graduated near the top of my high school class and from college with honors, passed the Law School Admissions Test in the 97%, passed the entire CPA exam in the first setting, did well in a highly ranked law school. You get the idea.

Yet in spite of my academic successes, there was always a part of me that didn’t measure up. I questioned myself constantly.  I struggled to stay on top of things, to stay organized. Despite my best efforts, my room was always a mess, my car was dirty and important items went missing. I hid it from everyone (well, except for my roommates, because, as it turns out, you can’t magically make yourself organized by simply saying “I’m a neatnick.” They find out eventually that you are in fact a clutteraholic).

I couldn’t understand how someone so “put together” could have this dirty secret.

For many people, disorganization like this might not be a problem. But I grew up with parents who were as organized as the day is long (maybe longer). It is truly their gift. Their house, even with growing and messy children and their friends in and out, always looked like a model home. Always. Anything less simply wasn’t acceptable. And organization comes easily to both of my parents. You walk into their house and just breathe a sigh of relief because there is not a bit of clutter anywhere. They still can’t understand how someone can keep a messy house or not balance a checkbook. It is all a matter of self-discipline, they say. They didn’t used the word “lazy” to describe people who can’t accomplish such tasks, but that was the description I internalized.

I have spent the better part of my adult life feeling like a failure, feeling like my house will never be clean enough because it’s not ready for company at the drop of a hat. Embarrassed that I struggle to complete tasks and have 15 million “really awesome ideas” I never get around to bringing to fruition. Frustrated that my car is a mess, my purse is a mess, that I, by extension, am a mess.  Confused that I can’t seem to focus on anything anymore.

And then, my daughter happened. My sweet, beautiful, spunky daughter. And she was a mess. A hot ball of fire running around, with a mess following in her footsteps. She didn’t care that she was dirty, or that her room was a mess, or that she hadn’t done her homework. She wasn’t defiant about it – she just got sidetracked by life. And she did everything late – she talked late, she wrote late, she read late. But she eventually got it. All in her own time. And, now, at 9, she is reading above grade level. But school has been such a struggle for her. She does OK academically, but she works hard for that OK.

School was always a struggle for my husband. He has so many gifts, but God love him, academics aren’t exactly among them. So I thought, she’s just like daddy. School is going to be a struggle. We just have to push her along to get her out of school, and she can find a career in the arts where that kind of stuff doesn’t matter.

And I really believed it. I believed my daughter just wasn’t capable of more — that underperforming was the best she could do.

Mom and daughter smiling

 

 

Three weeks ago, we had my daughter tested for ADHD. The first thing the psychologist said to me when she went over her results was, “Were you in GATE (Gifted and Talented Education) when you were a child? Because your daughter should be.” I cried. I love my daughter so much, but in my own ignorance, I had sold my daughter short. It’s not that she isn’t smart. She’s actually very, very smart. And so incredibly capable. But her ADHD means her brain doesn’t get what it needs to help her function to her optimal abilities. And all the organizational seminars and tutoring in the world won’t necessarily change that. She is really smart child who performs below average. And she has so much anxiety about it – because she knows she is capable of better, but she can’t consistently produce better.

I now understand how many girls with ADHD go undiagnosed for so long. My daughter was one of them. Gifted girls who are underperforming, and no one knows why. She was a good kid with no behavioral issues. In my research, I am learning that these are the ones who so often go undiagnosed.

In the wake of her diagnosis, I had myself tested as well.

And I have the dubious honor of having the highest ADHD testing score of anyone in my psychologist’s history. True story. The psychologist actually asked me, “How have you been able to function for so long?” All the things I have internalized for so long – all the things I thought of as failures, as laziness, as just not enough self discipline — I was wrong. Completely wrong. My brain is just wired differently. What an incredible gift to realize this. I only wish I had learned it at 9, instead of at 40. If only I had known then what I know now, maybe my self-talk would have been different all these years. Maybe I would have reached out sooner, would have tried to stop managing it with just “better organizational practices.” But hindsight is 20/20.

Mom and daughter kissing

At this point, all we can do is learn from our past and make our futures better. For my daughter and I, that means finding the right medication to help us be the best we can be. And, maybe, in opening up about our experience, we can help the mother of another little girl somewhere. Maybe we can help her spot a diamond hiding behind ADHD.

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