Why there’s no “gold standard” for adult ADHD tests

Last fall, I heard something that floored me: The tests we have for ADHD in adults don’t work very well.

As an adult with ADHD, I think about this all the time because our diagnosis is so stigmatized and so misunderstood. It’s overdiagnosed. It’s underdiagnosed. Everybody has it. Nobody has it.

If only there were a silver bullet or some test that could definitively say yes or no.

So, I asked the two Chicago School faculty members who got me thinking about this after their presentation at the CHADD conference last year: Jessica Rosenfeld, a clinical psychologist, and Reneh Karamians, a  neurorehabilitation psychologist.

They explained why adult ADHD diagnosis is so difficult, and how new scan technology holds promise for spotting ADHD in the brain. 

• Listen: Is ADHD genetic? We asked a Harvard scientist 

• Listen: Understood Explains: ADHD in adults

Rae Jacobson: Essentially, they have to draw a line in the sand somewhere. They have to say, "This is ADHD and this isn't ADHD." And I think part of the challenge is we're not really sure where to draw that line anymore. One of the biggest questions in the ADHD world is something that, on its face, seems like it isn't even a question at all: How do we know if someone has ADHD?

You might say, "Well, they get tested, right? They see a professional, they answer questions, they get diagnosed. Boom." And that's what I thought until I was sitting in a talk given by two researchers at the CHADD ADHD conference last year, and they said something that floored me: The tests we have for ADHD in adults don't really work very well.

Now, I want to be super clear about something here: This is not unique to ADHD. We don't have perfect tests for most mental health differences. But the stigma around ADHD — "Everyone has it," "Nobody has it," "It's overblown," "It's just med seeking" — that means that for this diagnosis more than any other, this lack of a perfect, objective test is something that feels almost taboo to discuss.

It also means that finding something that could give clinicians a stronger, clearer tool to identify adults with ADHD would be huge. Not just for diagnosticians, but for all of us who feel like we're constantly being told to prove that this huge piece of who we are is real at all. And if there were such a tool, it actually might come from something like the very research our guests for today are working on.

Jessica Rosenfeld: I'm Dr. Jessica Rosenfeld. I am a clinical psychologist and a faculty member at the Chicago School's Los Angeles campus. I have been working with ADHD and adult ADHD for many years, doing diagnosis and treatment.

Reneh Karamians: And I'm Dr. Reneh Karamians. I'm a neuropsychologist and a rehabilitation psychologist working with people with injuries. Those two specialties, I call myself a neurorehabilitation psychologist.

Rae: Jessica and Reneh work closely together at the Chicago School in LA. And they were kind enough to come on today to talk to us about their exciting research, the state of adult ADHD testing today, and why, for now anyway, there's no gold standard for adult ADHD tests.

I wanted to start with the thing that had rattled me when I first heard Jessica and Reneh speak: What is going on with adult ADHD testing? Jessica had been clear to say that the ADHD assessments we have for children are very reliable. So what is it about diagnosing adults that's so different and so difficult?

Jessica: The challenge with diagnosing ADHD, particularly ADHD in adults, is multifaceted. One, our diagnostic criteria are based largely on the presentation that we see in children. And so when we look at the things we expect a child to be able to do versus the things that we expect an adult to be able to do, those are different things.

Can you sit still in your classroom while your teacher is talking, or can you do circle time with the other children? That's a very different task than can you show up to work on time and sit at your desk and self — regulate yourself for eight hours.

Rae: Jessica says that this kind of criteria is also tricky because adults are better at masking, and because so many people with ADHD, especially those who were missed as kids, often carry a huge amount of shame. Shame that can make it really hard to tell anyone, including your doctor, that you're struggling.

Jessica: But the perception is maybe that you're immature or you're not serious or something to that effect. So making the diagnosis of ADHD for an adult — so we're talking specifically about adults who were not, for whatever reason, diagnosed when they were children — is complicated because there's a lot of comorbidities, meaning there's a lot of other diagnoses that could be causing these symptoms or exacerbating these symptoms.

One example that we can use is anxiety. If I'm anxious, if I'm sitting somewhere and I'm nervous, I'm not able to pay attention to my environment very well. That's just what anxiety does to our brains. And so if you have ADHD and then you're feeling anxious because you know that you usually miss information, now you're really anxious that you're going to miss some information. Well, that's just going to turn the dial up on your inattention. So you're going to end up being even more inattentive and more confused.

So all of that to say, psychologists' normed measures are starting to not really hold up to the rigorous scientific baselines that we want to see. Is that accurate?

Reneh: Yeah.

Jessica: So when I'm talking about these tests not working, it's not yes or no. It's not black or white. And I don't want somebody to walk away from our talk or from listening to this podcast and be like, "Somebody was unethical. They did something that they shouldn't have done." Absolutely not. I think I'm an ethical person and I use assessments as a part of my diagnostics when I'm evaluating an adult for an ADHD diagnosis. But they're not the be — all, end — all. And I think the thing that really spurred our conversation was the "WAIS".

Rae: The "WAIS", the "Wechsler Adult Intelligence Scale", is one of the most commonly used tests for measuring intelligence and cognitive ability in adults. Jessica told me that clinicians used to think that some parts of the test were good at showing if someone has ADHD.

But now, even the publisher of the test says the "WAIS" is not good for diagnosing ADHD. It can only help rule out other potential diagnoses. And it does this by giving clinicians like Jessica what kind of amounts to a profile of the brain.

Jessica: How does your brain work? Do you have higher processing, faster processing, or slower processing? Are you able to hold lots of information in your mind in your working memory or not? Sometimes this is indicative of ADHD. Whether this measure, the "WAIS", can now capture that in a meaningful way, that's what's being debated.

(05:31)How "normed" tests compare patients to a healthy population baseline.

Reneh: Let me kind of go off of that a little bit. So first of all, what we mean by normed — I don't know your audience very well, but first of all what we're talking about —

Rae: Talk to me like I am a human baby.

Reneh: A human baby, okay. So what we mean by normed test is we essentially create a test through a lot of hard scientific work. Then we give it to — and with this particular test — 2,100 healthy individuals. We see how they score, we standardize those scores, and then we compare our patients to how the healthy people scored. So that's what we mean by norm. We are comparing our patient to the other ones.

So that's what these tests are. They're all normed in one way or another. I just actually gave a lecture on the "WISC". The "WAIS" is the "Wechsler Adult Intelligence Scale", and the "WISC" is the "Wechsler Intelligence Scale for Children".

So even with the "WISC", and I just gave a lecture on it, we were looking at control versus what we'll call disordered. And for everything from intellectual disability, all of these subscales and indexes were way lower than control. When it came to ADHD, they were lower, especially in working memory and processing speed, which are the two indexes that are typically lower with ADHD, and they were statistically significant, which means scientifically they were significantly lower than control.

But the actual difference between the scores was maybe five to seven points. And a clinician who sees that — even though it was statistically significant mathematically — is going to look at that and say, "Well, that's not low enough."

Rae: So Reneh is saying that though these tests, the "WAIS" and even the version given to kids, the "WISC", are great for some things, they're not great at measuring ADHD. But the child version, the "WISC", is a little bit better.

Reneh: So that clinician outside of that scientific research, if they're not familiar with it, are maybe not going to be able to see it, even with the child version of it, which is apparently a little bit more sensitive.

(07:59) The differences between the gold standard of childhood assessment and adult evaluations.

Rae: That said, in kids, there is a gold standard of ADHD assessment. It's just not one test. It's what's called a neuropsychological evaluation. Kids who get a full neuro — psych will take a series of tests, but the evaluator will also get a detailed clinical history, talk to the child's parents and teachers, and even sometimes go observe them at their school. These evaluations aren't just for ADHD; they're also used to rule out other disorders or spot specific learning disabilities. For adults, that gold standard is a lot harder to find for a lot of different reasons.

But don't we need a gold standard? We know that there are a lot of adults with ADHD, especially women who were overlooked during childhood, and we know we need a reliable measure for assessing ADHD in adulthood. So what do we do? Turns out, not everyone agrees.

Jessica: When we're talking about ADHD diagnosis in adults, that's the struggle. We don't actually really have a gold standard. A gold standard of care can mean different things, but it usually means that whatever the process is has gone through rigorous clinical trials. There's usually some kind of federal involvement in developing these standards. Would you agree with that?

Reneh: Mm-hmm.

Jessica: Yeah. There hasn't been something like that for adult ADHD. And so what the quote — unquote gold standard has become is what best practices are believed to be. And there's quite a debate in the field about what that is and what that means.

There are some clinicians, incredible psychologists who do a lot of work in this area, who say you don't need the neuropsychological piece of the assessment unless you're trying to rule out a learning disability or intellectual disability, because those diagnoses do have really great efficacy in these tests.

But for ADHD, we're pulling different pieces of that measure out, we're giving the patient more information, but it's not designed to diagnose ADHD. So we have a few measures that have been designed specifically to diagnose ADHD, but they're mostly questionnaires.

So they're the kinds of things where you're going to circle one — how much do you agree with this statement — or they send it home and maybe your partner or your teacher, your boss if you have that relationship with them, circles the thing. And then we take a look at them and we can study them.

Statistics underlying those kinds of questionnaires are very different than the statistics underlying these neuropsychological tests. The way we develop them is a bit different. So they're very different kinds of measures. They should be a part of an ADHD diagnostic process. But I think where we're debating in the field is whether that neuro — psych piece belongs. And what's drawing a lot of clinicians to the neuro — psych piece is it feels more objective.

Rae: Feels more or is more?

Jessica: Ah, good clarification. So it should be more objective. They're not perfect. Nothing is. And I'll often say that to patients: These tests were developed by humans, normed by humans, are being administered by a human, and interpreted by a human. So absolutely there is fallibility in all science, even blood tests. Nothing is 100% accurate.

But that's why we need good clinicians who really understand this diagnosis and understand the different ways that it can show up to take all that information together. I realize we were talking about gold standard. There isn't a widely accepted gold standard. There's a lot of researchers out there trying to develop one, but that kind of study takes years to do.

And we've really only recognized that ADHD can persist into adulthood in the last — I'm probably going to be off in my dates a little bit here, but in the last like 20 or 30 years. Quite recent, especially in the scope of scientific study. So it's not so much that all of these tests are unhelpful or useless; it is simply that we don't really know how useful they are. And right now, this perfect measure that I would seek, I think, that we would like there to be, doesn't exist.

And that's really challenging as someone who's coming in for diagnosis, someone who's trying to administer a diagnosis, someone who's just trying to get a sense of what the science really says.

(11:51) The potential future of ADHD diagnosis using brainwave measurements via EEG.

Rae: In a dream world, if there could be a perfect measure, it might be something like what Reneh is working on. Right now, he's developing an ADHD assessment that uses EEG testing. EEG stands for electroencephalogram, and it uses electrodes like small metal disks that attach to the head and measure electrical impulses in your brain.

These impulses measure as actual electricity and come when brain cells communicate with each other. EEGs are already being used medically for diagnosing things like epilepsy or other seizure conditions. But as Reneh says, EEGs have the potential to help us understand a lot of other stuff that's happening in the brain.

And this is where things start to sound like a little sci-fi for me anyway. To Reneh, though, it's all perfectly normal. And he says that EEGs can also give us readings of brainwaves. Essentially, measuring these different waves can help clinicians see which parts of the brain are lighting up and which ones aren't. And this can show whether you're drowsy or you're awake or you're excited or engaged.

There are a few different kinds of brainwaves and they vary in speed, with delta being the slowest and gamma being the fastest. Cool, but how does this help us know if someone has ADHD? Reneh was nice enough to explain.

Reneh: So there's been some research for decades now about certain ratios of the — between the beta and theta bandwidths. So theta is the second-to-last. Delta is like you're super drowsy, probably asleep. Theta is like you're drowsy, but you're probably not asleep; they're very slow waves. And then beta is kind of like you're — you're a little bit active, you're kind of engaged in something.

So you can actually take the beta-theta bandwidths and divide them, and you get a ratio. And so researchers have shown once you divide those — depending on whatever unit — if it's more than three, that the higher above three, the more likely it is that you have an ADHD diagnosis. But it seems to me, based on the current research, even though it's still not perfect, the beta-theta ratio is the kind of the one that shows the most promise.

Rae: So to recap, if you still don't get this, which is fine because I'm not 100% that I do either, EEGs can measure brainwaves. And to a trained clinician, those measurements communicate a ton of information about how you're using your brain at any given time.

Are you asleep? Are you excited? Are you drunk? Reneh told us a great story about testing an EEG on himself after a few shots of vodka that we heartbreakingly did not get on tape. But I digress. Anyway, in the same vein, there's research that indicates brainwaves of people with ADHD may show up differently on the EEGs.

And researchers like Reneh and Jessica have promising evidence that the information from EEGs may one day be able to help us diagnose ADHD.

(14:48) The current limitations of using EEG as a definitive diagnostic tool for ADHD.

Rae: That said, the results of studies have been mixed. And though there's agreement in the scientific community that these tools may one day be helpful as diagnostic tools, everyone also agrees that that day is not today. So to be blunt, does it work yet?

Reneh: The EEG?

Rae: Yeah, to diagnose ADHD. Is it actually something we can use yet? I see some head shaking.

Reneh: So the research is mixed right now. And when the research is mixed, the answer is no. Science is, you know, we have to have certainty. So when the research is mixed, the answer is we're going to keep doing research to answer that question. It shows potential, but we can't say that it is a proper diagnostic tool yet.

Rae: So there's promise for using the EEG as a diagnostic tool. But as good scientists, Reneh and Jessica are careful to say that at the moment, there is not enough evidence to say, "Yes, this works. Let's all do it."

And just a PSA from here at "Hyperfocus": If someone says they can scan your brain and tell you if you have ADHD, that person is highly suspect. Just saying. Science often moves more slowly than we'd like. Being thorough takes time. But while we're waiting, what does this mean about the assessments that we have?

And what about those of us, myself included, who were diagnosed as adults? Can we trust the diagnosis we were given?

Reneh: Historically, these tests were working, I think.

Jessica: Yeah. We were using them and they were sensitive. The research was showing that these tests were sensitive and all this. Something has changed in the population, and this is my personal hypothesis, something has changed in the population where these tests are no longer picking it up.

And I think it might have to do with the changes in video games, the changes in entertainment and social media. People with ADHD, they have somehow — it's almost like they've got the cheat code to our test now, because for some reason all the games, the video games they're playing, have kind of primed them to be good at passing our test now. Because historically the research showed that these tests work. I think — and I don't know if you agree with that.

Jessica: I do. And I think a lot about the attention economy, which you're sort of speaking to. We are being pulled in so many directions right now and our brains are just not wired to evolve that quickly and respond that quickly.

And so I absolutely think we have missed people in the ADHD world. People need this diagnosis to understand themselves, or they desperately want this diagnosis to understand themselves. And at a population level, we're all dealing with a lot more demands on our attention and on our focus.

And so I think part of the challenge, in addition to what Reneh is saying here — maybe we are getting better at the kind of computerized test like we were talking about before, we're priming our brains, we're teaching them how to do these things in a more specific way — I think we're also struggling more to pay attention.

(17:47) How impairment serves as the primary indicator for a formal ADHD diagnosis.

Jessica: And so when we're talking about diagnosis, the system that we use in America is based largely on the American Psychiatric Association's Diagnostic and Statistical Manual for Mental Health Disorders, the "DSM". Essentially, they have to draw a line in the sand somewhere. They have to say, "This is ADHD and this isn't ADHD." And I think part of the challenge is we're not really sure where to draw that line anymore.

Rae: We hear a lot now about ADHD being a spectrum. And I feel like all of this that I'm kind of coming to is you work in this world, I work in this world, I have ADHD. People are very, very comfortable saying like, "But is it real? Doesn't everybody kind of have it?" And you know what? It's really frustrating. It's really upsetting.

It feels really undermining. At the same time, when we talk about, well, there's video games and our attention is pulled and we're not different than we were in 1929 — that to me in some ways validates that argument that there is just a certain base level of this. So when you talk about where is the line, for me, when I try to explain this to other people, what I say is the line is impairment.

Jessica: Yes. I was just going to say that.

Rae: When does it start to mess up your life? And I wonder how, when we talk about testing, because one of the questions that I keep coming back to is: Are we ever going to have a sure-fire, we know you have it, we know you don't test for ADHD? And I just have to wonder just sort of, is impairment the thing? Is that going to be the thing that makes there a yes and a no?

Jessica: I think it's a really good question.

Reneh: I mean, impairment is always the thing. The "DSM" is where we classify mental disorders of all kinds. ADHD's in there. So we have criteria that people have to meet. For example, for depression, sad more often during a week than not would be a criteria.

And so the last criteria is typically for 99% of disorders: causes academic, social, or occupational dysfunction. So if — if something is happening and it's not causing problems in your life, it's not really diagnosable because what's the problem?

Rae: Yeah, why would you bother getting diagnosed?

Reneh: So that is always a criteria, is that it — it has to cause impairment. It has to cause problems.

Jessica: Yeah. I have a little soapbox that I'm like — do I get up on the soapbox? Okay, I'm getting up on the soapbox. So this is one of the things though that as a clinician — so I do testing, I do the diagnosis, but I also treat and work with people who have ADHD.

And as a clinician, if we're billing your insurance, we have to have some code to put down for that. We can't commit insurance fraud. But my ethical, my personal care is you and helping you. And so what Reneh is saying is correct, what we're trained to do when we talk about research studies, we have to meet that threshold of impairment.

But if you are struggling and yet you're still functioning, which I think we see a lot in the ADHD world where like — I am struggling internally, but I — like work could be so much easier, but I'm like pulling it all off. And especially when we're women, we're talking about women with ADHD or high-masking ADHD folks, they — they look functional.

And that's where we end up scratching our head sometimes if we put on that diagnosis hat or we put on that scientist hat, because it's like, well, they — they don't have a disorder. But yet I can tell you as a therapist, absolutely there's something going on here. You are struggling. You are straining against your internal reserves, you're exhausted, and I want to help you with those things.

And so we can call that ADHD and we can work with that therapeutically as ADHD. And to me, that's the most important piece of my work. And I think what happens so often in our world when you're talking about the naysayers and the like — well, is it, well, the blah, blah, blah — is it meaningful to you? Is this describing what is happening? Let's put the diagnostic criteria aside for just a second and let's like work with the person in front of you. And I think that's where science and like public — where we struggle to treat the person as a person, as a complex person.

(23:36) The struggle of validating adult ADHD in a world where symptoms are often minimized.

Rae: You know, it's funny because in some ways that's such a wonderful thing to hear and it resonates so much with what I like to think of when I think of how you would perceive a client or a patient with ADHD or any other person who came into either of your offices and was like, "I'm having a hard time."

And then at the same time, there's a part of me that feels not unsatisfied, but is like because so much of the life of a person with ADHD — if you want to talk about it, if you aren't silent about it, which many of us are — is spent sort of defending the existence of your ADHD. Like the fact that you have it at all, that it's real, that it's a real problem, that it affects you.

It's tricky because you kind of want that objective measure. You kind of want that thing that's like, you can point to it and be like, "See? This line on the EEG, that means that's my brain and I have ADHD." So when I ask kind of like, is there ever going to be a sure — fire, look at this piece of paper, here's my bona fides, I no longer have to explain myself to you test? Is that something that's coming?

Jessica: I'm like, do we have that for anything?

Rae: Well, that is a question I have. Do we have that for anything? Things that are easily accepted: depression, anxiety, even some of the more severe disorders like bipolar disorder? Can we point to that piece of paper for them either?

Jessica: No. Because people don't say the same things about those disorders as they do about ADHD. Correct. We don't have that for any — for any of our diagnoses, except maybe the neurocognitive ones that you talk about more in the neuropsychology world like traumatic brain injury, dementia, all of that. There are few things in the "DSM" that we have like the line on the EEG for.

Rae: So ADHD is not unique in this at all. It just seems to be the one that people focus on?

Jessica: It's the one that societally has so much stigma attached to it in that specific way.

Reneh: I think part of the reason — and I will just validate all of you out there — if you've been diagnosed, ADHD is real. A thousand percent. People — people have it, but there's been so — it's been sensationalized in social media so much that I think that has played a big part in invalidating because people see like — I'm scrolling through Instagram and I see "What is your ADHD type?"

Almost as if to say everybody has ADHD. "What is your ADHD type?" When really that is very misleading. And I think that is what when people who don't believe they have ADHD see these things on Instagram — what type of ADHD do you have? — they start to believe, well, everybody thinks they have ADHD because look at this — it's on Instagram, it must be true. Look at this doctor giving this test to see what kind of ADHD you have.

I think that's playing a big part in — in making people think that everybody has it, when in reality if you look at the research in the "DSM" as described for prevalence, it is relatively low. It is as low as depression or anxiety. So no, everybody doesn't have it, but if you're struggling, again, our tests are not the best, but they are the best instruments that we have right now.

Our treatments for cancer right now are not the best. If you go 200 years in the future, they're going to look back on how we're treating cancer right now and think that we're barbarians, right?

Rae: I've seen that "Star Trek" movie.

Reneh: Exactly, right! I was thinking of McCoy myself — Dr. McCoy. This is terrible. Yeah. And so we look back on all the treatments that they had 200 years ago. But it's the best that we have right now. Yeah. So if you feel like you have it, go get assessed, do some research on the clinician, make sure that they're qualified. If you're diagnosed with it, then you have it. That — it exists.

"Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson. Calvin Knie is our video producer and video is edited by Alyssa Shea. Our research correspondent is Dr. KJ Winn. Briana Berry is our production director and Neil Drumming is our editorial director.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocus@understood.org. This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

Understood is a nonprofit dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, you can donate at understood.org/give.