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.

Is Twitter the next big thing in ADHD diagnosis?

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Yesterday, I received my daily Google Alert email update for the search terms “attention deficit.” I’ve had this set up for several years, but I must admit, I don’t often check it; I can offer no better excuse than that it is rather hard to keep abreast of daily news about attention deficit if you suffer chronically from it. In any case, this time, something compelled me to read through the headlines compiled in the email, and one caught my attention (no pun intended): “Searching for ADHD in a Million Tweets.” It states: 

After analyzing 1.3 million tweets written by nearly 1,400 Twitter users, researchers at the University of Pennsylvania have created a machine learning model that can predict which of the site’s users are affected by attention deficit/hyperactivity disorder (ADHD). […] Researchers monitored Twitter users with self-reported ADHD, comparing them to a set written by age- and gender-matched controls. The team then used various machine learning models to search for patterns in the two sets of tweets.

It might come as a surprise to you, my readers, but I must say, I find the whole thing terribly problematic. Why? Because it fails to take into account the fact that there are as many manifestations of ADHD as people living with it. The effects of ADHD in the life of one person may be entirely different from that of another.

For example, Lyle Ungar, one of the study co-authors, was quoted as saying, “I didn’t realize how common it was for patients to use marijuana to treat their symptoms, so you see people talking more about dope and weed.” But in contrast to these ADHDers, I avoid pot like the plague, not wanting to be any more dumbed down than I already am.

Meanwhile, according to the abstract of the article accompanying the research, published Nov. 8 in the Journal of Attention Disorders, “Users with ADHD are found to be less agreeable, more open, to post more often, and to use more negations, hedging, and swear words. Posts are suggestive of themes of emotional dysregulation, self-criticism, substance abuse, and exhaustion.” It seems to me the way these results have been reported is liable to reify negative stereotypes associated with ADHD. 

ADHD: not ‘one-size-fits-all’

I commend anyone wishing to shed light on ADHD, which after all is still arcane to most people who neither live with it or know someone who does. Also, for the record, I’m well aware of the inherent value of the internet, and social media, in particular, having minored in communication studies as an undergrad at the University of Oregon.

Even so, this research is misguided. It assumes there is one, and only one, kind of life ADHDers live, regardless of gender identity, socioeconomic status, race, etc. 

True, some health outcomes are more likely for people with ADHD. Depression, eating disorders, and self-injury are among a slew of comorbidities, or co-occurring conditions, in ADHD women, for instance. But therein lies the salient point: These aspects are common in ADHD women, specifically. As Devon Frye notes in a blog post on ADDitude, “men with ADHD are more likely to have substance-abuse problems while women with ADHD are more likely to have personality or mood disorders.”

Thinking outside the ADHD box

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Far from demarginalizing ADHDers, the reasoning driving this research homogenizes the ADHD experience. I love the idea of a group of researchers at an Ivy-League institution setting out to make things easier for people who may have ADHD. This is especially so because Ungar has said while ADHD is less well studied than conditions like depression, “Understanding the components that people have or don’t have, the range of coping mechanisms that people use all leads to a better understanding of the condition.”

What we really need

What people with ADHD — those who have been diagnosed with it, those who suspect they have it, and especially, perhaps, those who live with it unknowingly — really need is for the medical community to realize there is no one, singular ADHD experience.

Yes, this does make it harder to single out people who are likely to have undiagnosed, and thus, untreated ADHD. Yes, this does mean there would need to be a concerted effort to map all tweets from studied ADHDers, and not just those that appear so frequently as to be acceptable to make generalizations about said ADHDers.

But the effect — newfound insight into ADHD in all its countless iterations — would be well worth it.

 

5 reasons to diagnose an ADHD girl when she’s young (ADHD Awareness Month post #6)

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I was diagnosed with attention-deficit hyperactivity disorder, better known as ADHD when I was 5. For 1994 — and even 2017 — this was unusual: Girls typically are diagnosed later in life than boys; tending to exhibit symptoms of inattentiveness, rather than hyperactivity, they fly under the radar of parents, teachers, and other adults in their lives. I, however, was one of those rare littlest females whose symptoms included inattentiveness and hyperactivity. Although this meant my ADHD was severe enough to send up a red flag, it also signified I would get the help I needed at a much younger age than many little girls do even today. And I can tell you from personal experience that the younger a child with severe ADHD is diagnosed, the better. But that’s not all. According to the Centers for Disease Control and Prevention (CDC), “About 2 million of the more than 6 million children with ADHD were diagnosed as young children aged 2–5 years,” however, “Children with more severe ADHD are more likely to be diagnosed early.” But I believe that girls with even milder forms of ADHD should be diagnosed earlier as well. Here’s why:

1. It may take a while to identify the right treatment regimen for her.

This is a passage from the CDC’s National Center on Birth Defects and Developmental Disabilities website:

For children 6 years of age and older, the American Academy of Pediatrics … recommends both behavior therapy and medication as good options, preferably both together. For young children (under 6 years of age) with ADHD, behavior therapy is recommended as the first line of treatment, before medication is tried. Good treatment plans will include close monitoring of whether and how much the treatment helps the child’s behavior, and making changes as needed along the way.

As you can see, there is a lot of wiggle room — whether or not you want it — in the creation of treatment regimens for little ones with ADHD. And it is much better to start this process early in a girl’s education. Ideally, in fact, it would be finalized (for the time being) even before first grade, so that, come the first day of school, she’ll be able to start her academic career on a level playing field. 

2. She needs time to figure out her limitations and how to work around them. 

Just because a girl finds a medication that works for her or has success in therapy doesn’t mean she’s limitation-free. As I’ve said in the past, ADHD medications aren’t 100 percent effective, and CNS stimulant medications last 12 hours at most. Even with modern medicine, the onus is on the ADHD girl to know what she’s capable of — or isn’t, as the case may be — and engage with life accordingly.

3. The earlier she is diagnosed, the earlier she qualifies for accommodations

This can include accommodations via an Individual Education Program (IEP), as well as informal academic accommodations requested by parents or even arranged with a teacher at the request of the girl herself (see below). For all their shortcomings vis-à-vis their response to my ADHD, most of my K-12 teachers were reasonable enough to agree to informal accommodations if I made an effort to propose them, and the few who didn’t, well, they eventually consented once my mom intervened (thanks, Mom)! But my experience was the exception, not the rule. The fact is, people are a lot more likely to be decent human beings and accommodate kids with ADHD if there’s a legal impetus for them to do so. 

4. She should have plenty of time to learn to self-advocate.

According to the CDC, an article published in the Journal of Attention Disorders found that “girls who had a number of symptoms when they were young were as likely as boys to continue to have those symptoms after they became teenagers.” Thus, ADHD can be a chronic (long-lasting) issue for all children, regardless of gender. This means an ADHD girl needs to know just what’s wrong with her (her neurology, not her character) so she can develop coping mechanisms and learn to adapt her life to her brain, such as by arranging informal accommodations with a teacher (see above).

5. She deserves, right from the start, to know she is not a bad person.

As I said, a problem with your neurology doesn’t indicate a problem with your character. In fact, if you find out that you have a mental disorder, in this case, ADHD, you’re also finding out that you haven’t actually been to blame for all the “bad” things you do or ways you behave. But this revelation only comes with the proper diagnosis. The reason this is particularly pivotal for girls, even more so than boys, is that in this world of misogyny and sexism, people whose gender is coded ‘female’ have enough to grapple with just by said gender. There is no need to compound those challenges with untreated neurological impairments; in fact, that must be avoided at all costs.