The hidden reason ADHD girls are going undiagnosed

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It’s no secret ADHD women often go undiagnosed until well into adulthood — years and even decades later than their male counterparts

According to a recent CNN article, this is due in part to the fact that, “As a disorder traditionally seen as affecting males, and with males referred more often for a diagnosis, research to assess ADHD has been based on samples largely consisting of boys.”

A related explanation is that unlike little boys, whose hyperactivity sends up a red flag to teachers and parents, little girls tend toward symptoms of inattention. They struggle to concentrate and can often be found daydreaming — or so the existent literature on the subject says — and such behavior is less noticeable to adults who are in a position to get a child the help they need. So it goes that boys, at 12.1 percent, are more than twice as likely as girls, at 5.5 percent, to have current ADHD, according to the National Survey of Children’s Health 2003-2011.

But you know what? I call bullshit. That’s only half the story.

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The lie we need to stop telling women about ADHD

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Girls are less likely than boys to be diagnosed with attention-deficit hyperactivity disorder. The general consensus is this is because for boys this tends to manifest in hyperactivity, which is much more noticeable to parents and teachers than inattentiveness, the type of symptom most common in girls. Luckily, as awareness spreads (albeit sometimes at a seemingly glacial pace), more and more women are eventually finding out the distress they’ve dealt with for their whole lives has a neurological explanation, and it’s called ADHD.

The long-delayed moment of diagnosis is often held up as a new beginning for the diagnosed. But while being diagnosed may very well be the most significant event in an ADHDer’s life, it’s not the be-all, end-all everybody makes it out to be. No, ADHD diagnosis is a new beginning — just not of pure, wholesale relief forever after. Instead, it’s the beginning of a life of newfound clarity about enduring struggles, for enduring they indeed are: Even if she starts an ADHD treatment regimen, pharmacological or otherwise, post-diagnosis, the ADHD woman faces an uphill battle that will continue for the rest of her life.

Nobody ever seems to talk about the extreme fallibility of ADHD medications, at least those currently on the market. In truth, ADHD is often treatment-refractory or treatment-resistant, meaning an ADHD medication may only have potency in a given person for a limited period of time, if at all. Now, there are two primary classes of CNS stimulant medications: amphetamine, aka Adderall, and methylphenidate, aka Ritalin. Most people respond better to one type of stimulant than the other. But many people, for whatever reason, don’t get symptom relief from either.

Moreover, you can have the most positive response possible to a given medication, but still not experience complete ADHD symptom relief, even temporarily. Unfortunately, the neurotypical expect us ADHDers to perform at their neurotypical levels if we’ve been “lucky enough” to be diagnosed and treated. Promised patience tends to run dry.

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This is particularly unfortunate for women, who earn the censure of society for displaying ADHD symptoms that tend to be revered in men. For instance, a man who doesn’t follow directions is deemed an “out-of-the-box thinker,” while a woman gets a reputation for recklessness. And a man who speaks out of turn is viewed as assertive; a woman, lacking self-control.

On top of that, women are tacitly expected to assume and maintain responsibility not only for themselves but also their entire household, both in its upkeep and of its members. Many women discover their ADHD at some point during or after their child’s diagnostic process. The upshot is these women being responsible for a higher than average degree of care for children with ADHD when they, in fact, need to expend extra effort just to take care of themselves. 

Just to put it into perspective, for you, I’ve been aware of and received treatment for my ADHD since early childhood, yet even I have to strive every single day just to avoid falling behind. Getting ahead, excelling almost always feels like a pipe dream — this, despite the fact that I’m on the highest possible dosage of all of my medications; not to mention, I live with my parents, rent-free! 

All of this is to say, it’s time to infuse a little honesty into the adulthood-diagnosis narrative, especially for women. We need to stop leading these ADHDers to believe everything is going to be OK because frankly, it’s highly unlikely that will turn out to be 100 percent true. Again, this is in large part because of the tacit mandate to fulfill traditional gender roles. As Kathleen Nadeau, one of the foremost experts on women and ADHD, explains,

Society has a certain set of expectations we place on women and ADHD often makes them harder to accomplish. … They are supposed to be the organizer, planner, and primary parent at home. Women are expected to remember birthdays and anniversaries and do laundry and keep track of events. That is all hard for someone with ADHD.

Honesty, it seems to me, is what’s called for here — honesty and compassion. And in that vein, there’s also a great need to reconfigure the typical response to a newly diagnosed ADHD woman, which right now is something to the effect of, “Congratulations! You have ADHD. Good luck!”

In this day and age, that kind of MO is unrealistic, and as such, utterly unhelpful.

It’s OK to know your own limit if you have ADHD.

I always hear people talking sympathetically about how ADHD makes it harder to do certain things. But despite that apparent understanding of my disability, the neurotypical party line seems to be that we ADHDers need to keep pushing ourselves to our “full potential,” and that we will be able to do more if we try.

The problem is, neurologically speaking, ADHD makes the very act of trying a challenge in and of itself. 

Double trouble

To quote the abstract of an article published in the journal Molecular Psychiatry in 2011, “disruption of the dopamine reward pathway is associated with motivation deficits in ADHD adults, which may contribute to attention deficits.” In other words, a hiccup in the nervous system of a person born with ADHD results in difficulty paying attention, AND trouble getting motivated to OVERCOME this challenge.

Think about this for a second: Wouldn’t it be sufficiently sucky to have impaired attention OR motivation? Wouldn’t either be enough on its own to have a deleterious impact, in both the short term and the long run for someone who, like any of us, is, after all, only human? I think we can all agree the appropriate answer would be ‘Oh my god, yes.’

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Below average

And neurotypical people don’t seem to realize just how VULNERABLE being unmotivated can make you. Decades and decades after the birth of the American Dream, at least in the U.S., Western society continues to value a healthy work ethic above perhaps any other quality. So, it’s one thing to realize you lack the motivation to clean the kitchen, and decide to hold off on doing it tomorrow in the privacy of your apartment; faltering in this way in public, meanwhile, exposes you to the censure of your friends, family, colleagues, etc. It feels sort of like literally everybody else in the world is giving you side-eye.

Furthermore, this problem isn’t confined to questions of productivity; sometimes, even maintaining the ability to go about what to an outsider looks like ordinary daily life can be a significant struggle as well.

Do I speak from personal experience? You bet I do.

Reality check

Between Oct. 25 and Nov. 8, I was visiting my boyfriend in Washington, D.C., where he’s in grad school. Washington is actually a lot like Portland; it’s big on public transportation. But it and I have always had a fraught relationship; the sequencing involved in navigating transit infrastructure is a sizable challenge for me. However, in D.C., I didn’t have an alternate means of transportation, i.e., my car.

Anyway, after a week of walking whenever outside my boyfriend’s apartment, I admitted to myself it was time: I had to take the bus. Unfortunately, this happened to coincide with me discovering that my pharmacist had not given me a full 28 days’ worth of my immediate-release Focalin when I went to fill my prescription for the month. Long story short, I was undermedicated and faced with a task that would require a tremendous amount of effort on my best day, on what was, in fact, my worst.

After about two hours, I managed to work up the motivation to input the information on my iPhone necessary for Siri to guide me to the bus and tell me what to do once I got on it. But to my utter lack of surprise, I was unable to find the bus stop and realized I would have missed the bus even if I had been able to pinpoint where to get on it.

I knew what my parents and my boyfriend would tell me to do: figure out where the stop was and wait for the right bus, or walk to an entirely different stop if necessary. But at that moment, I knew making even that tiny extra effort was totally and completely beyond my abilities. So although it was far more expensive than the bus would have been, I ordered a Lyft. 

It’s inherently empowering to cease pretending to be in denial about yourself and what you’re capable of. The politically correct response to others pushing you to find more motivation within yourself is to express appreciation for their confidence and a plucky resolve to prove them right. However, I’ve had ADHD all my life, so the extent of my neurological stamina has long since revealed itself to me. I know what I can and can’t do. More importantly, I’m AWARE that I can’t do what I can’t do, and I understand WHY I can’t, as well. I and all people with ADHD deserve to live life authentically, limitations and all.

And that is just what I intend, from now on, to do.