When ADHD advocates talk about ADHD awareness, we tend to talk about it as a continuous, ongoing process. Awareness is something we raise or spread or improve, not an item on our to-do list that gets crossed off when we’re done.
The reason for talking about ADHD awareness in these terms is obvious: we’re so far from being “done” building awareness around ADHD, that any discussion about when our work would be complete is purely theoretical.
Still, it’s worth asking what kind of world we are looking to build. If mental health advocates could achieve “perfect” ADHD awareness overnight, what would our society look like?
There are at least four goals of ADHD awareness we should take into account – and four ways a society completely accepting of people with ADHD would differ from our own.
1. Everyone with ADHD could get diagnosed
Many people with ADHD go their entire lives without even knowing they have ADHD. The ones who do know still might not get officially diagnosed.
Underdiagnosis happens for several reasons, such as:
- People not realizing they have possible ADHD symptoms and therefore not seeking diagnosis
- People not having adequate health coverage to afford the diagnostic process
- Doctors lacking knowledge to properly diagnose ADHD
- ADHD being “hidden” by other, comorbid conditions
A recent systematic review of studies including 21 million older adults found that 2.18 percent of people surveyed had clinical levels of ADHD symptoms but only .23 percent had actually been diagnosed with ADHD.
Underdiagnosis is a problem at the other end of the age spectrum, too. Undiagnosed symptoms put 12-year-old children at higher risk of low self-esteem, depression and social problems. A study of 51,000 children in Denmark found that factors like being female, having lower socioeconomic status, and living in certain areas made some children less likely to get diagnosed than others.
In an ideal ADHD-accepting society, that would all be different.
ADHD awareness would be so widespread in the general population that people with ADHD would know their symptoms warranted speaking to mental health professionals. No one would be having surprise discoveries after living for decades with undiagnosed ADHD and not realizing it.
Plus, everyone would have affordable access to mental health professionals with thorough knowledge of ADHD. No one would have to pass on an ADHD diagnosis because of out-of-pocket expenses, nor would they be told by flippant doctors that they’re too old, too quiet, too successful or too smart to have ADHD.
2. Everyone with a diagnosis could access the treatment they wanted
Getting diagnosed doesn’t guarantee access to treatment. But in our theoretical, completely ADHD-aware society it would.
Right now, the same factors that lead to underdiagnosis can also obstruct the path from diagnosis to treatment. Those factors include a lack of affordable healthcare options and medical professionals whose knowledge isn’t in line with the latest science-based understanding of ADHD.
Remember the systematic review I mentioned that found a huge discrepancy between rates of clinical ADHD symptoms (2.18 percent) and rates of actual diagnosis (.23 percent) among older adults? Well, the rate of ADHD treatment was even lower: .09 percent. To put it another way, the rate of people with diagnosable ADHD was about 20 times higher than the rate of people being treated for ADHD.
At this point you may be wondering: how can ADHD be undertreated if I see so many media reports of ADHD medication being overprescribed or of ADHD being an “epidemic”?
The obvious answer is that media hype doesn’t give an accurate picture, but there’s also a more nuanced answer that a 2020 study hints at. That study considered medical records from 40,000 patients in California, 5.1 percent of whom had been diagnosed with ADHD.
The study found wildly differing ADHD diagnosis rates from one doctor to the next. Some doctors diagnosed 8 percent of their patients with ADHD, and others regularly saw patients without ever diagnosing a single case of ADHD. When many medical professionals still lack adequate knowledge about ADHD, overdiagnosis and underdiagnosis can happen at the same time, depending on the doctor. Unfortunately, while the overdiagnosis side of that equation makes for a catchy news headline, people whose lives are affected by untreated ADHD symptoms haven’t garnered the same amount of media attention.
When we say that everyone in an ADHD-aware society would have access to treatment, notice that we’re not saying everyone should be taking every available treatment.
Evidence-based ADHD treatments include medication, psychotherapy and coaching. Which treatments to pursue is an individual decision, best made considering the unique context of one’s life with consultation from a knowledgeable mental health professional. But everyone should have the option to access the treatments that are right for them.
3. Workplaces, schools and other institutions would flexibly accommodate neurodiverse brains
A society with widespread ADHD awareness would value neurodiversity, the principle that people have brains that work differently.
In many environments, someone with an ADHD brain might best function in a way that’s different than how someone with a neurotypical brain would best function – because the ADHD brain does things differently.
The ADHD brain learns differently. Someone with ADHD might be at a disadvantage in a classroom that emphasizes listening to long lectures, sitting still for extended periods of time, or never making careless mistakes.
The ADHD brain works differently. In the workplace, someone with ADHD might perform better if they can move around while they work, organize their schedule in a certain way, or put on headphones with music to help them concentrate.
Building institutions that flexibly accommodate people with different brains is a win-win. For people with conditions like ADHD, it allows them to operate in the way that’s optimal for them. And for society, it means people with ADHD will be able to contribute more – they’ll learn more, be more productive, and generally flourish.
A key pillar of raising ADHD awareness is understanding that appropriate accommodations and levels of autonomy enable people with ADHD to thrive, then changing society’s institutions to make that happen.
4. You wouldn’t ever have to think twice about sharing your diagnosis with others
It’s easy to parade out numbers that show how underdiagnosed ADHD is, but everyone with ADHD has felt the lack of understanding around ADHD in a more visceral way – specifically, any time they’ve ever hesitated to reveal their diagnosis to someone.
Mental health advocates talk about stigma, or the tendency for people to associate negative characteristics with people who have mental health conditions. That idea may be unscientific and ignorant, but it has real consequences. It creates shame and silence, and it fuels discrimination.
If you’ve ever decided not to disclose your ADHD diagnosis for fear of negative consequences, you understand stigma intuitively.
Would you feel comfortable revealing an ADHD diagnosis to a potential employer, or your current one? Could you confidently share that diagnosis with all your family and friends, or with a stranger you’d just met?
In our ideal ADHD-accepting society, the answer would be yes. In the society we live in, however, it’s still too often a firm no.
Describing the ultimate goal of ADHD awareness in this way might seem pie-in-the-sky and utopian. After all, we’re clearly very far from a world in which someone can comfortably put an ADHD diagnosis on their resume and everyone has affordable access to the mental health treatments that fit their needs.
Even if we’ve got plenty of work left, though, we want to be clear what we’re working toward. It includes access to diagnosis, access to treatment, institutions that value neurodiversity, and acceptance rather than stigma.